Tag Archives: Chronic Illness

Book Review: Suffering the Silence by Allie Cashel

Last week, I read in a Dutch women’s magazine about the website Suffering the Silence, created by Allie Cashel and her friend Erica. Allie also wrote a book by the same title, which was published just weeks before. I immediately felt an urge to buy the book and did so on Friday. I just finished it and wanted to share a review.

Suffering the Silence describes Cashel’s own and other people’s struggles with what they see as chronic Lyme disease, but what is deemed a “medically unexplained” syndrome by most mainstream physicians. Allie Cashel was first diagnosed with Lyme disease in 1998 and has been suffering on and off ever since. While she originally found Dr. Bernard Raxlen, a Lyme-literate doctor as they’re called within the chronic Lyme community, other world-renowned doctors denied her infectious disease.

The book consists of four parts. In the first part, Cashel describes her own struggles with Lyme disease, her symptoms and her fight for recogntiion, as well as her self-doubt after famous doctors in Boston deny she is physically ill. She also provides an overview of the Lyme controversy.

In the second part, Cashel broadens the reader’s perspective by allowing other chronic Lyme sufferers to speak out. Many had a hard time getting properly diagnosed and treated for Lyme and its almost inevitable co-infections. Some found relief from long-term antibiotic treatments, while others found they were helped with other, even more non-conventional treatmets, and some found they could not be helped at all.

In part three, Cashel interviews doctors and scientists on all sides of the chronic Lyme controversy. She interviews one of the contributors to the Infectious Disease Society of America (IDSA) guidelines on Lyme dsease, which deny that chronc Lyme disease exists. She also interviews two scientists working on the prvention of Lyme, as well as Dr. Richard Horowitz, a physician who uses an alternative, multi-systemic model of infectious disease. It was at this point that, for the first time, I cringed, because Dr. Horowitz linked Lyme to the autism “epidemic”. While I am not completely opposed to alternative views of autism, it seemd Dr. Horowitz’s reasoning was a bit off.

Part four describes the ways in which people strive to reduce the stigma of Lyme disease and chronic illness in general, as well as the effect these conditions have on a person’s identity. I recognized a lot here, as a person who firmly embraces her identity as a multiply-disabled person. For once, this was seen as understandable, necessary for advocacy even. I liked the affirmation Cashel designed for herself, embracing her status as a Lyme disease sufferer and affirming that other people believed her about this. As a person whose family does not believe in her autism and anything that cannot be seen, and opposes the identification with disabilities, I liked this.

The book is both a captivating memoir and collection of patient stories, and an intriguing work of research into the chronic Lyme disease controversy. I loved it.

Book Details

Title: Suffering the Silence: Chronic Lyme Disease in an Age of Denial
Author: Allie Cashel
Publisher: North Atlantic Books
Date Published: September 2015

Everyday Gyaan

Brilliant blog posts on HonestMum.com

My #InvisibleFight: Fighting for Recognition of Chronic Illness

This year, Invisible Illness Awareness Week, which takes place from September 28 to October 4, has as its theme “My invisible fght”. I wrote for INvisible Illness Awarness Week in 2013, but skipped it in 2014, believing I didn’t qualify as someone with an invisible illness. Of course, I have a mental illness, but in my twisted mind I thought that didn’t count.

Over the years, I have been fighting to get a proper diagnosis and treatment for my chronic fatigue, irritable bowel symptoms and other random fun. Until early 2015, my syptoms were dismissed as being behavioral. What I mean by this is what I wrote yesterday: I was doing too little so I was fatigued. Never mind the other symptoms.

In February of this year, I was diagnosed with vitamin D, B12 and iron deficiencies. All were treated for some time, but eventually I was taken off all but vitamin D. This is a bit ironic, since vitamin D is the most potentially harmful of these three supplements and I have not had my vitamin D levels tested since April.

My doctor also didn’t follow the protocl for treating vitamin B12 deficiency. I had to insist on getting subcutaneous shots insead of tablets. The B12 research group in the Netherlands recommends shots, reasoning that, unless you’re strictly vegan,, you probably have a problem with absorption of vitamin B12 or you wouldn’t be deficient in it. The research group recommends starting with twice-weekly injections for five weeks followed by tapering based on symptoms, not serum B12 levels. I got the recommended five weeks of injections but they were discontinued after that.

I happen to be the odd one out where it comes to B12 deficiency, not having had a return in symptoms for about a month after the injections were stopped and having normal serum B12 levels even four months after my last shot. Though my symptoms returned, my B12 levels were normal about a month ago and the research group does not support supplementing without testing low in B12. Apparently, or so I assume, B12 deficiency wasn’t the root of my symptoms.

Does it matter what the root is? If there’s a targeted treatment, of course it does. If a simple pill or shot could help me live a normal life again, thee’s no reason not to fight for that. But I’ve now had these symptoms for so long. I’ve been on iron and B12 and now vitamin D for so long on and off with little long-term improvement. I’ve had so many blood tests and other tests that came back normal. And yet I’m still sick.

What am I fighting for, I wonder. If no treatment can cure my symptoms, isn’t it just the diagnosis, the recognition that something is wrong, that I fight for? In all honesty, I have to answer this question affirmatively. It’s not that I don’t also want treatment, but I also want to be validated. Is this normal?

in a way, it is. Most people with chronic physical health symptoms fight to be recognized as physically ill. They obviously also fight for treatment, but they also fight the stigma that is associated with the notion that they are psychologically ill. The problem is that, by wanting to be recognized as physically ill even if there is no known cause or treatment for our illness, we add to the stigma of mental illness.

Don’t get me wrong: physical symptoms need to be treated as they are, physical. Every possibility needs to be exhausted to find a cause and treatment for the symptoms. If there is none, that also doesn’t mean the cause is psychological or that psychological intervention will help. But it just might. Let’s fight for proper treatment of chronic illnesses and health problems, no matter their (presumed) roots.

Everyday Gyaan

Also linking up with #InvisibleFight at Invisible Illness Awareness Week. I will probably be writing another post on September 28 to honor the start of Invisible illness Week 2015.

(Not So) Busy: Looking at the Roots of My Fatigue

This week at the spin cycle, the writing prompt is “busy”. I am not technically very busy. I do not work, after all, and am not in full-time school. I still have enough time to sleep, although I sleep often at the wrong moments. During the day, that is.

That being said, you might believe it would be easy to incorporate new requirements into my schedule. Exercise three times a week. Go to the educational department at my institution to study for 90 minutes twice a week and study for an extra hour on Sundays. Write a blog post everyday Monday through Friday. Yet why don’t I accomplish this?

It’s probably that I feel too overwhelmed. It’s not necessarily that there’s not enough hours in the day, but that there are too many requirements on my mind at the same time.

I also, of course, do have limited energy. I don’t know why, but it’s probably one of those symptoms of the aches and pains of daily living. What I mean is, I don’t have a physiological explanation for it, but it’s there nonetheless.

I am not busy as a bee most of the time. Sometimes, I have more energy and tend to put my day full of activities. It seems I’m almost normal then. Right now, I feel far from normal. I feel exhausted while I’ve hardly even done much of anything.

When I once read part of a book about medically unexplained chronic health symptoms, the author presumed there were two causes of these types of symptoms (other than of course an unknown physiological ailment). Some people tended to push through and do too much, while others tended to give up and do too little. On the surface, I appear to be fiercely in the second category. After all, even on days when I feel as though I push through, I don’t do nearly as much as a healthy person my age. I still don’t work or go to school full-time and I don’t care for a family.

However, it seems to me like I do have issues with dividing my limited energy correctly, pushing through on days when I feel lots of energy and giving up on days when I feel little. Psychological treatments of mental illnesses like bipolar disorder, which include fluctuations in energy levels, teach the exact opposite. Dialectical behavior therapy for borderline personality disorder also teaches acting opposite to one’s state of mind. Could it be that I, too, need to rest when I feel energetic and push through when I feel fatigued?

I know that conventional treatment of chronic fatigue syndrome follows this line of thought. Now I don’t claim to have CFS, and I don’t mean to say that this line of treatment is correct for those who do have CFS. What I mean is that it could be helpful for me.

Everyday Gyaan

Common Myths About Irritable Bowel Syndrome

In 2013, I was provisionally diagnosed with irritable bowel syndrome (IBS) after no other cause for my chronic abdominal pain and alternating diarrhea and constipation had been found. I don’t have a severe case of it, having mild to moderate abdominal pain a few times a week but rarely severe pain. I am usually not significantly disabled by my symptoms either. I also happen to respond quite well to mebeverine (Colofab), an antispasmodic that relaxes the bowel muscles. Nonetheless, it is frustrating that there are still many common misconceptions about IBS. Here, I will share some of these.

1. IBS is just a fancy way of saying abdominal pain. It is true that the diagnosis of IBS is commonly based on symptom assessments and exclusion of other disorders, since there is no laboratory test to prove someone has IBS. However, IBS has many symptoms other than abdominal pain, and besides, the abdominal pain suffered by IBS patients is chronic and can be severe. It is not like, if you have bowel cramps for a day, you have IBS. Other core symptoms of IBS are diarrhea and/or constipation, feeling bloated, straining or urgency to defecate. Many sufferers have additional fatigue, acid reflux, etc.

2. IBS is all in the head. It is unclear what causes IBS, and stress could be a factor. That doesn’t mean it’s all in the head though. Stress can cause physical symptoms that are no less real just because stress causes them. It is also correct that IBS is associated with problems in the communication between the brain and the gut, but that could be both a brain and a gut problem. For example, people with IBS may be hypersensitive to abdominal discomfort. This however does not mean they choose to be in pain or are overreacting. It is an interplay between biological and psychosocial factors that cause people to experience the symptoms of IBS.

3. There is no clear definition of iBS. Like I said, there is no test for IBS, but there is a definition. For several decades, the Rome criteria have been in use for determining who has IBS. These criteria require that patients have had recurrent abdominal pain or discomfort at least three days per month during the previous three months that is associated with two
or more of the following:

  • Relieved by defecation.

  • Onset associated with a change in stool frequency.

  • Onset associated with a change in stool form or appearance.

When these criteria are met, only limited tests are recommended based on the individual’s situation. In my own case, it was hard to determine whether I met these criteria, as my pain certainly wasn’t relieved by defecation and I wasn’t sure of the other two.

4. IBS is caused by poor diet and lifestyle. Just [insert lifestyle habit or diet here] and you’ll be fine. While some people have food sensitivities that contribute to their abdominal discomfort, others do not. Also, indeed, some people find that exercisng more, not drinking alcohol, not smoking, etc. helps them. Others do not. Besides, even for those who do find that their diet or lifestyle contributes to their IBS symptoms, it may not be easy or may even be extremely hard to adjust their lifestyle or diet. I for one seem to be sensitive to sugary foods, but, as regular readers of my blog will know, I cannot seem to stop eating too much candy.

5. My [family member’s, friend’s, …] IBS was cured by [intervention], so yours can be cured too. Every person with IBS is different, and because many things contribute to IBS symptoms, there are many possible treatments. Mebeverine, the antispasmodic I use on occasion, has few side effects, but also is not very effective with most people. I am lucky that it helps me somewhat, but others wll not find relief from their symptoms with it. Same for diet, lifestyle changes, other medications (eg. antidepressants), psychological interventions, etc. They work for some but not othes.

6. IBS is the same as inflammatory bowel disease (IBD). Inflammatory bowel disease refers to Crohn’s Disease and ulcerative colitis. These are diseases which cause chronic inflammation to the digestive tract. Though some IBS sufferers have minor inflammation, especially if their symptoms set on after infection, it is not nearly as bad as with IBD. I for one had elevated calprotectin, an inflammation marker, when I was first tested for this. This led the doctor to think I might have IBD and get me a colonoscopy. Turns out I didn’t have IBD and on later tests, my calprotectin was normal again. It could’ve been I had an infection contributing to my symptoms.

7. IBS increases the risk of colon cancer. This is another difference between IBS and IBD: while IBD patients have a markedly increased risk of developing colon cancer, IBS patients do not.

8. IBS is not a serious concern. It is true, like I said above, that IBS does not cause cancer or suchlike. However, that doesn’t mean it’s not serious. Many people with irritable bowel syndrome find their symptoms to be severe and disabling. Besides, because IBS is so often misunderstood, many people experience social stigma. This can lead to further suffering. Get educated and stop stigmatizing people who have IBS.

Everyday Gyaan
Mums' Days

New Definition for ME/CFS: Exclude People with Mental Illness?

I follow a few blogs by people with chronic pain and fatigue conditions. On one of them, I came across the new Institute of Medicine (IOM) report on the diagnosis of chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME). In this report, the IOM propose a new name and criteria for CFS/ME. Most people in the CFS/ME community are mildly positive about the new proposed name, which is systemic exertion intolerance disease (SEID). They don’t like the emphasis on only exertion intolerance, but they consider it better than the dreaded term “fatigue”.

What remains controversial is the definition of SEID. It is defiined by the following core criteria:

  • A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue—which is often profound—of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.

  • The worsening of patients’ symptoms after any type of exertion—such as physical, cognitive, or emotional stress—known as post-exertional malaise

  • Unrefreshing sleep.

In addition, a person must either experience cognitive impairment or orthostatic intolerance (symptoms being worse when in an upright position and lessening when lying down).

Problems with these new proposed definition include it ignoring common additonal symptoms, such as gastorintestinal symptoms, sensitivity to stimuli, pain, etc. I heard that these symptoms are included in an addendum to the IOM report somewhere.

What is further said to be problematic is that the definition is overly broad. Particularly, a psychiatric diagnosis does not preclude a diagnosis of SEID. Why this is a problem, I wondered, and it led to a heated debate.

I have written about this before, and got many defensive comments from ME/CFS sufferers saying that a physical illness requires different treamtent than a mental one. I agree, and I think (and just checked to make sure) I said that there is evidence that ME/CFS/SEID/whatever is physical in nature. The fact remains, however, that no blood test or whatever can diagnose it, so there is no way to distinguish it from somatization (psychological problems leading to physical symptoms).

I understand that there is a huge stigma associated with mental illness and that ME/CFS/SEID sufferers don’t want to face the same stigma. I also understand that bloggers cannot advocate for every single person or group of people in the world. Then again, the solution isn’t to purposefully exclude groups of people from the treatment or rights you advocate for.

So let’s get the facts straight. ME/CFS/SEID leads to profound physical symptoms. There is, however, no test to diagnose it, like a blood or urine test or whatever. No mental illness precludes people from falling ill with physical symptoms, though people with certain mental illnesses are more likely to suffer with physical symptoms. This does not mean these symptoms are due to the person’s mental illness. Furthermore, the current edition of the psychiatric manual, DSM-5, does not require a thorough physical examination and exclusion of all physical illnesses in order to diagnose somatization. Therefore, there is basically no way to differentiate an illness with physical symptoms for which there is no objective diagnostic tool, such as ME/CFS/SEID, from somatization. Whether ME/CFS/SEID is seen as mental or as physical, is largely an issue of politics.

Let me be clear that I side with the people who say that ME/CFS/SEID is physical, simply because it causes profound physical symptoms. Unless a person is faking their symptoms for external gain, there is no way to deny that they are real. But this is still a political opinion, not a medical one.

The reason people want ME/CFS/SEID to be seen as physical, is because of its treatment. Sufferers have often experienced the horrors of graded exercise and cognitive-behavioral therapy, which quite often do not work. At the same time, they seem to want people with mental illness, including those wiht comorbid physical symptoms, to get graded exercise and CBT. Fine with me if it works, but what if it doesn’t? Again, there is nothing in a mental illness that precludes its sufferers from falling ill with a physical illness too. Since there is no way to tell somatization and ME/CFS/SEID apart, you choose whether they’re both physical or mental, or you treat each person based on what works for them individually. I advocate the latter.

I have a diagnosed mental illness and largely unexplained physical symptoms, including exertion intolerance. My diagnosis for the symptoms that have been given a label, is irritable bowel syndrome, which similar to ME/CFS/SEID, is not diagnosable through an objective test. CBT has not worked for me. I tried exercise, though not a graded exercise therapy (GET) program, and it made my symptoms worse. Maybe if I did actual GET, it’d help. That would mean that, in my individual case, my symptoms (at least the ones responding to GET) are treatable with behavioral change. It would not even say whether my symptoms are physical or mental in nature, if there’s even such a distinction. However, for the sake of simplicity let’s assume that, for those for whom GET/CBT works, their symptoms are mental. That doesn’t mean that, for those whose symptoms are judged as mental, CBT/GET should work, and again, this is a political choice. It wouldn’t say anything about the next patient with my diagnosis and my symptoms. It certiinly wouldn’t say anything about a person with much more severe physical symptoms than mine who happens to have a diangosed mental illness. It’s complicated, but until an objective test for ME/CFS/SEID (and all other such illnesses) is found, that’s the fact we need to deal with.

Mental Illness Is Real Illness Too #BADD2014

When I signed up to participate in Blogging Against Disablism Day 2014, I originally intended to write a semi-academic post on what it means ot be disabled and who can identify as such. Then I read Kees Kooman’s Dutch book on chronic fatigue syndrome (ME/CFS), which is aimed at advocating the idea that ME/CFS is a physical rather than psychological illness. Fine with me – there is a lot of evidence that ME/CFS is a physical illness. What bothers me, however, is the idea, propagated throughout the book and in many other places within the chronic illness community, that a physical illness is somehow more real than a mental illness.

I have a mental illness. I also have largely unexplained physical symptoms, which the doctors for now call probable irritable bowel syndrome. IBS, like ME/CFS, is an illness with clear physical symptoms which however have not yet been explained. This doesn’t mean no explanation will be found – many cases of “hysteria” in Freud’s era were later found to be brain tumors, after all.

However, what if IBS and ME/CFS are actually psychological? Does this mean that we don’t want to get better, as Kooman continually suggests. In my experience, living with a diagnosed mental illness, it doesn’t.

I see this kind of ableism towards the mentally ill everywhere. I have met many autistics who resist the idea of autism as a psychiatric diagnosis. While again I am on their side, their arguments discriminate against the mentally ill. It isn’t like mentally ill people always need to be pushed into independence, while autistics and others with neurodevelopmental conditions need lifelong support.

In case you’re wondering why I care, here’s why. The Dutch Long-Term Care Act, which is due to take effect next year, originally excluded those with psychiatric conditions (which I’m assuming includes autism without intellectual disability) from care. People with mental illness needed to get care and treatment through health insurance and locally-funded social support. The mental health platform, supported housing alliance and some other stakeholders fought this exclusion and it seems now that those who’ve been in residential treatment for at least three years on end, will qualify for long-term supported housing. I would qualify under this condition, but the large number of revolving-door patients, who are constantly being admitted, discharged and readmitted, wouldn’t.

The mental illness means not wanting to get better idea also has practical implications for treatment. People with certain mental illnessses, like personality disorders, are already stigmatized for being just a pain in the butt. I have been told many times that I’m manipulative, attention-seeking, and just having behaivor problems that I need to overcome. Of course it is wrong to assume the same of ME/CFS and IBS patients, but why in the world do they need a physical cause for their illness to claim they’re truly suffering?

Let me make it very clear that I’m not saying that ME/CFS is all in your head. I’m saying that if it were, that still didn’t mean you don’t want to get better. Symptoms are real, whether they’re psychological or physical and, if physical, whether a medical cause can be found or not. As a person who has been accused of imagining a mental illness, I want to say that, unless someone is malingering (ie. faking for external gain), it doesn’t matter what the cause of the illness or disability is in terms of whether it is a real illness or disability. Whether you strive for the illness or disability to be cured, by the way, doesn’t determine whether you’re ill or disabled eihter, but that is beyond the scope of this post.

Myths about Health Anxiety

In a chronic illness Facebook group I’m part of, a member talked about having “possible hypchondriac” written in her medical records. This led to a discussion of chornic illnes, hypochondriasis and illness anxiety, as hypochondriasis is now called in DSM-5, medical knowledge, imagining or faking symptoms. There are a lot of prevailing myths about health anxiety, which I feel compelled to write about.

First, this person had a known chornic illness. The DSM-5 criteria for illness anxiety disorder clearly state that, if a general medical condition is present or there is a high risk of developing such a condition (eg. strong family history), illness anxiety disorder should only be diagnosed if the person’s anxiety is clearly out of proportion to the medical condition. Also, the criteria say that people with illness anxieyt usually suffer no or only mild somatic symptoms. I am not sure how to interpret this, as everyone suffers somatic symptoms at times, and the DSM-IV specified that hypochondriacs misinterpreted real bodily signals. That’s not the same as somatic symptoms, I believe. Anyway, for these reasons, it is pretty unlikely that a person who has a known chornic illness, can be diagnosed with illness anxiety disorder.

Another prevailing myth is that knowing a lot about medical terminology indicates you’re ahypochondriac. Well, in such a case all doctors ought to be hypochondriacs. Also, talking, writing or reaidng a lot about illness is not a symptom of illness anxiety disorder, unless it’s accompanied by anxiety about having the acctual illness. I am not a hypochondriac for reading blogs about medical disorders that I don’t have. Yay!

Making up symptoms or creating them is also not hypochondriasis. People who fake illness to take on the sick role have a factitious disorder (aka Münchausen Syndrome). People who fake illness for secondary gains (eg. disability benefits), are malingering. These two need to be differentiated: factitious disorder, even in its harmful forms (ie. Münchausen by proxy), is a real mental illness and should be treated as such. Malingering is not. Doctors still have a hard time diagnosing certain cases of malingering due to having sympathy for the faker.

Lastly, please remember that having or being perceived as having a bad attitude about your health or illness, is not hypochondriasis. People deal with chronic or serious illness differently, and most of this falls within the normal range. Where it becomes distressing to the patient, it may be illness anxiety disorder (or depression or another mental illness). Being a pain in the butt for other people, may be too bad, but it’s not a psychiatric disorder.

No Need for Permission to Voice Your Pain

I went to the gastroenterologist last Wednesday, who said I may have irritable bowel syndrome. This diagnosis used to be pretty controversial. It ws only years ago that I heard a doctor on TV say that we used to sit through abdominal pain without complaining and now we take meds for our irritable bowels.

I thought of this when I read a post by Dawn Santos on needing permission to voice our pain. Dawn said she’d tell every normal person who’d complain like she wanted to, to seek counseling. Her post is meant to validate those with chronic pain conditions that they have the right to complain, but as a person who’s suffered from abdominal pain and other symptoms for years without having a diagnosis or often being visibly in pain, I want to say it doesn’t matter whether you are or appear normal.

I am not saying that chrnic pain is not worse than being in pain only every once in a while. What I do say is that the dichotomous line between healthy and ill is arbitrary. I recently read an interview with another doctor, who said he has some form of arthritis but considers himself pretty healthy. I on the other hand have considered myself somewhat ill for some years now, despite not having a diagnosis. I can see why my attitude is not as upbeat as his, and there are many factors to this. Pain levels may be one (I have no clue in how much pain this doctor is on a regular basis). Psychological factors like coping mechanisms, attribution style etc. contribute too.

You may not be able to see whether someone has a chronic pain condition or not. Besides, mental health problems are real problems, too, and Dawn’s comment about counseling made me feel that it’s merely a bad attitude. I want to say that no-one needs permission to voice their pain. Of course, it’s best if you stay somewhat positive and don’t complain all the time, but as an onlooker, you can’t see how much effort someone puts into getting through the day with some level of positivity. Therefore, this should not be a reason to judge someone’s complaining. Getting fed up with it sometimes is okay, but that’s true whether the other person has a (known) chronic pain condition or not.

Meme: 30 Things About My Invisible Illness

I found this interesting meme for invisible illness week, so here goes.

1. The illness I live with is: undiagnosed other than mental illness (borderline personality disorder).
2. I was diagnosed with it in the year: not diagnosed for my physical symptoms. Diagnosed with BPD in 2013.
3. But I had symptoms since: 2007.
4. The biggest adjustment I’ve had to make is: taking meds everyday.
5. Most people assume: my illness is unreal because it’s not diagnosed.
6. The hardest part about mornings are: waking up tired.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: my mobile Internet modem.
9. The hardest part about nights are: going to sleep on time, pain.
10. Each day I take __ pills & vitamins. (No comments, please): 6.
11. Regarding alternative treatments I: have not tried them but am open to some.
12. If I had to choose between an invisible illness or visible I would choose: visible.
13. Regarding working and career: I don’t work, have never worked. I was given disability benefits with no problem based on my visible disability which is the least of my disabilities.
14. People would be surprised to know: that I’m in pain even when I don’t show it.
15. The hardest thing to accept about my new reality has been: that I can’t live with my husband.
16. Something I never thought I could do with my illness that I did was: take a university-level course.
17. The commercials about my illness: I’ve never seen/heard any.
18. Something I really miss doing since I was diagnosed is: go for long walks alone.
19. It was really hard to have to give up: my dreams.
20. A new hobby I have taken up since my diagnosis is: crafting.
21. If I could have one day of feeling normal again I would: have a great day with my husband.
22. My illness has taught me: all about stigma.
23. Want to know a secret? One thing people say that gets under my skin is: “It’s just stress.”
24. But I love it when people: genuinely ask how I am.
25. My favorite motto, scripture, quote that gets me through tough times is: “Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.” – Helen Keller.
26. When someone is diagnosed I’d like to tell them: well I’ve not been diagnosed with anythign yet except for the BPD which I was just diagnosed with, so I’d like to be on the receiving end of some advice first.
27. Something that has surprised me about living with an illness is: how cruel people can be about judging who is really ill and who isn’t.
28. The nicest thing someone did for me when I wasn’t feeling well was: allowing me to whine for a bit.
29. I’m involved with Invisible Illness Week because: I want to teach people about undiagnosed illnesses and mental illness.
30. The fact that you read this list makes me feel: appreciated.

Undiagnosed Symptoms Are Just as Real #IIWK13

Just a few weeks ago, I found out about this year’s Invisible Illness Week, which starts today. I already heard of it years ago, but never quite took the time to write for it. Until now. Today, I want to share my experience to get awareness of what invisible illness is like, and especially, how it can take years to get a proper diagnosis (and hopefully treatment).

I have suffered from my symptoms, which include fatigue, random aches and gastrointestinal symptoms since 2007. I went to my doctor for the first time in late 2007, having had diarrhea on and off for half a year. She chalked it up to a stomach bug. Then, when I got it through to her that it’d been going on for months, I was examined and the doctor found I was actually constipated. Well, nice. Drink lots of fluids, eat lots of fiber, but the symptoms did not go away. I was eventually put on a laxative, which worked to some extent but gave me bad cramps.

For the fatigue, I got various blood tests and these revealed iron deficiency, then B12 deficiency, then nothing. I was told that the random aches were just stress. Not that this makes them go away, but oh well.

My symptoms are still there, and I don’t have a diagnosis, although I self-diagnose as having irritable bowel syndrome, because I honestly don’t buy into the constipation theory. I feel out of place in the chronic illness community not having a diagnosis, and of course I want my symptoms to be something simple that isn’t a chronic illness. Then again, it’s not like symptoms are less real just because they don’t have a label to them. Many people, like myself, take months to years to go see doctor, longer to see the right doctor, and maybe I’ll never find out what’s really going on with me or get adequate treatment. Maybe I will at some point. I hope so.