Fibromyalgia — understanding a hidden illness

The doctors last words to me after diagnosing me with fibromyalgia were, "You've been given everything by God. Beauty, money, brains, but you weren't blessed with good health." I got into the car with absolute shock. I never heard of fibromyalgia before, but I knew it wasn't curable. 

I called my mother and burst into tears, telling what my diagnosis was. The news travelled fast across my family and they all started to research it. All the symptoms made complete sense. They all felt helpless, because none of them were able to fix my problem. Not with all the money in the world. 

It's a funny world. People spend all their lives ensuring they get money or make more money, and I who have been born into a wealthy family spent a lot of money to find out and cure my illness, until the diagnosis finally struck me with reality. The reality that money will not cure my problem. Ever.

My absences started to increase drastically at work, with a new reason each time. Back pain, muscle spasm, migraines, nausea, fatigue, until the director called me in one day and mockingly told me to give them notice of when I'm going to get sick. He thought I was lying or "being a girl". I actually started to doubt myself and would force myself to go to work. 

The bathroom became my secret hiding space. If only walls could talk. I would go into the bathroom stalls to either vomit, faint, cry from body pains or have seizures (but that's a whole other story). 

I can describe the pain in two different ways. It feels like body aches when you have the flu or the muscle pain after a hard workout, where it is hard to walk, or your abs hurt when you laugh, or it is difficult to move your arms after weight lifting. 

The only difference is, I feel the pain 24 hours a day, 7 days a week and one place every day will hurt me more intensely than the other places. It can cause me to have difficulty moving my head for example if my neck hurts.

A few of the other symptoms I deal with are nausea, migraines and fatigue. Sometimes the migraines can get so bad that I go blind and I feel like ripping my head off. The fatigue causes me to sleep for a minimum of 15 hours and can go up to 20. 

It basically feels like I am not rested no matter how much I have slept. When I reach this point, if someone tries to wake me up and have a conversation with me I can't comprehend or respond much. I've been in stages where I tried to force myself to wake up, but I end up blacking out as soon as I get out of bed.

I also found out that there are 6 stages to fibromyalgia. I believe I am in stage 5 now. I was in complete denial the day after I was diagnosed and asked for many blood tests to be done. Me request was rejected as blood tests of exclusion were already done. 

Stage 5 basically involved me accepting what is wrong with me, and realizing that I have less of a social life as a result of not being invited out as much, because of the high possibility that I would cancel. I never know when I will have a good day or when I will feel sick. 

The most frustrating thing about fibromyalgia, is when I try to explain to someone that I am sick and I either get the response that it is psychological or I look fine. I have also heard whispers about me, saying that I am looking for attention. 

Attention is always good when we are told we are strong, beautiful, smart, but not when it comes to weaknesses such as ill health. I hope I only get attention for my strengths and not my weaknesses. 

Another interesting thing about fibromyalgia is that the symptoms sufferers deal with are different even with the description of pain and severity. It isn't something that we can die from, but it makes a normal life difficult to live day by day.

 Adjustments are necessary to make life easier. It has been difficult for me to adjust because I was used to being physically active and social and have had to depend on my intellectual capability at work. Nonetheless, it has taken me time to adjust, but has felt possible on days.

I saw a new doctor the other day because I had reached a whole new level of pain. The clothes I was wearing were hurting me. As soon as I entered the doctor’s office, I was crying uncontrollably, explaining to him that my clothes hurt. He asked me what he could offer me to feel better. I looked at him and my tears stopped for a second, "Can you give me my health back? Can you fix my problem?" 

He responded, "No. Unfortunately you will never be 100% better and you are one of the sufferers who does not respond well to any of the medications, but I can educate you." 

He grabbed a piece of paper and started educating me. I know I will never be the same again, but when you have a doctor that has done research on your illness that many doctors and people do not understand you start to feel better. I wouldn’t describe it as relief; more like a calmness.

If you have fibromyalgia, I understand what you are going through. If you do not have it, I have tried to explain it through my own story as much as possible. If you know someone who has it, please do not tell them it is psychological. Do not say, "but they look fine", because it is not a physical illness you can see. Do your research to try to understand it. Understand that fibromyalgia is real.

- Authored by Nadia Al Haroon -

Image credits:

Cover image: Huffington Post

Inline image: Church of Science