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Why I Used to Be Embarrassed to Tell People I Have Fibromyalgia and CFS

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I had really tough pregnancies filled with extreme sickness. I assumed after the last one I would finally start feeling better. Days turned into weeks and weeks turned into months. I talked to my doctor about it and he said because my body had been through something traumatic it would take a while to get back to normal.

But I didn’t get better. A year went by and I started to get scared. I ended up going to a different doctor and asked for every test they could possible give me. On the day I was to get the results I sat in the doctor’s office shaking. When the doctor came in he gave me a look of pity. Then he said, “We can’t find anything wrong with you.” I was shocked. There was no way I could feel this badly for so long and not have anything wrong with me.

He proceeded to tell me that based on my symptoms he was going to say that I had chronic fatigue syndrome (CFS) with fibromyalgia. My mind reeled at this. He was “going to say?” Is that even allowed in medicine? Doesn’t there have to be a blood test or something? It was as if he could read my mind as he proceeded to tell me he had eliminated everything else and unfortunately there wasn’t a blood test or any other test to determine for sure, but based on my symptoms this was what I was likely dealing with. I asked him what it meant and what could I do about it. He said there wasn’t much he could do to help me except prescribe some pain medication.

I was devastated. I had never heard of CFS. I had heard of fibromyalgia but not enough about it to understand what it meant. I went home and Googled both of them. I read medical websites and people’s personal stories. What I took away from my Google search was that doctors diagnosis illnesses like CFS and fibromyalgia when they can’t find anything else wrong, there are not a lot of options for care, that there are an unbelievable amount of possible (and horrific) symptoms, no one really knows the cause of these illnesses, most people are sick for the rest of their lives and there is a lot of stigma attached to both of them. I found people who were so sick they couldn’t get out of bed, work or live any part of their lives and there was literally nothing they could do about it. These people spent the majority of their time justifying their illness. My devastation turned into anger. This was so wrong. I knew I had to correct this injustice.

I told everyone I could about how sick I was. I talked a lot about how CFS and fibromyalgia sufferers needed help. I posted about it on Facebook and started a blog hoping to bring awareness and support. I waited for the rally cry of those around me that they were not going to stand for my suffering. I had seen rally cries for other people that I had known when they had received devastating diagnoses. I thought for sure I could be the champion for the CFS and fibromyalgia cause.

I waited and I waited and I waited. But there was no rally cry. The more I talked about CFS and fibromyalgia, the more people backed away. The more I talked about how sick I was, the more people stopped communicating with me. There were people in my life who never asked me how I was doing or asked me to explain my illnesses or offered their support. I couldn’t understand what was happening and why it felt like no one cared.

Over the next couple of years, I tried to continue talking about being sick in the hopes that at some point it would click with those around me. I read other people’s stories of suffering and about the stigma and stereotypes that surround the words CFS and fibromyalgia. I tried to bring to light the issues that come with what I consider invisible illnesses. About six months ago someone said to me “Oh, I have heard of fibromyalgia. My sister’s friend has that. It doesn’t even have a way to diagnosis it right? Basically, you are just a tired and have some aches and pains, right? Doesn’t everybody feel that way sometimes? You work and take care of your kids so it can’t be that bad. It could be worse, you should be more grateful.”

That was it for me. No wonder there was no rally cry behind me if that is what people really believed about CFS and fibromyalgia. After that I shut down. I posted very little about being sick. I silently shut my blog and my Facebook group down and I retreated behind a wall that I built around myself. I only allowed a select few in on how I was really feeling. The stigma around those two words was enough to stop me from using them all together. I have suffered mostly in silence since then. If I had to tell someone about being ill I would say I had a chronic illness. It allowed some mystery as to what I had. If people asked more about it I would gloss over what was really happening and tell them “I am sick a lot and I will have it the rest of my life” and then I would change the subject. It has been incredibly hard. I believe spending so much time pretending I am not sick has caused me to get sicker.

About a month ago I was back in another doctor’s office because I had some additional symptoms that I was concerned about. As has been the case for the last five years, the results were clear and I was still sick. I felt like I was splitting myself in two emotionally as I alternated between feeling disappointed and feeling immense relief.

I put my head in my hands and started to cry. I heard the doctor tell his nurse to give him a minute.

He sat down next to me and I lost it. I told him everything that I had gone through and how I had been feeling.

He sat silently for a while and then turned to me and said, ”Don’t ever let anyone tell you that what you have is not real. You are sick and you should never be ashamed. Once you realize it and own it, you will be able to move forward. Every illness and disease starts out unknown. You have a right to every emotion and feeling you have, but you can’t let it rule your life. You don’t need someone else’s rally cry. You are your own rally cry every day you get out of bed and survive the day. Be proud of your strength and courage. Be proud that you are surviving.”

I spent the next few days really taking his words in. He was right. I needed to stop feeling shame. I didn’t need validation from anyone else. I needed to decide how I was going to handle being sick on my terms and that I was 100 percent responsible for how I moved forward. Waiting for others was not going to help me continue this journey.

Now don’t get me wrong — this epiphany does not mean things have miraculously gotten better. I am still struggling. I am still sad that some people haven’t reached out. I am still hearing stereotypes that are associate with these illnesses. I am still crying myself to sleep some nights. I am still wondering, on my worst days, how I am going to make it to the next day. I am still struggling between being incredibly grateful it isn’t worse and wanting there to be a diagnosis that isn’t because everything else is ruled out. But what has changed is I no longer tie the names of these illnesses to whether my being sick is valid or not.

I will no longer say “chronic illness” with a hint of shame in my voice when someone asks me why I am sick. I will tell them “I am proudly surviving chronic fatigue syndrome and fibromyalgia.”

Originally published: July 1, 2016
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