Category Archives: Chronic Illness

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.

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

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.