When My Chronic Pain Is Questioned by Others

Over the past few weeks I have been introduced to many people who live with chronic illnesses and disabilities. Some were online through blog posts, some through video games, and others in real life. I have gotten to talk to and help quite a few people who are struggling. I have seen people in hard situations and have seen them powering through with a strength that makes me ashamed of myself.

In my opinion, everyone who struggles like this goes through a period of time when they question themselves on how much hardship they go through. I have been hit hard this last week. I have questioned how bad am I, what level pain should I admit too, and what right do I have to struggle in all my difficulties. One of my issues with invisible illnesses is that I am in constant stress over being judged on how I look.

“You don’t look sick.”

“Are you sure you aren’t feeling well?”

“It can’t be that bad if you are still able to walk around your house.”

Words ring in my ears and brain, reminding me that it must all be in my head. Famous words for anyone living with fibromyalgia, as most doctors are quick to throw them out.

I have had personal events happen that reinforce this. I have been denied disability. I submitted to the eight month long process that took place and have seen more doctors and nurse than I care to admit. Being weighed and measured, poked and prodded has been an absolute nightmare. I suffered through it and in the end I was deemed too fit to be on disability. In the end letter, it was determined that I do have fibromyalgia, insomnia, anxiety disorder, nerve pain, muscle pain and more. A total of nine severe problems with my health. They did not find these severe enough to warrant me disabled. My final icing on the cake was reading on of the last lines in my letter saying, “If your job is too difficult for your condition, find an easier job.”

My mind’s sarcastic response was, “Sure. I’ll go to the job tree and pick a new job straight off the branch.”

I have also had to fight with new insurance and new medications. I have been prescribed a new medication that is the first drug that I have seen that is specifically made for those with fibromyalgia. Being new, it is expensive. The classification it has been given by insurance is that unless every other test and drug has been used and found not to work, then they will not pay for it. Fighting to get help is one of the most common themes I see in chronic illness patients. As if we didn’t struggle enough.

In my recent post that has been published, I have been able to interact with many people that have a myriad of different conditions. I have wept over reading the stories of those who have struggled. I have talked and comforted those who asked. I have been praised for helping raise our voice so others can see. In all of this, I look back at myself and ask, “Am I really that sick?”

Do I have the right to be a voice if I am not struggling as much as those around me? I am constantly questioned on how bad my pain and condition is that I am beginning to question myself. Yes, I have pain – but is it bad enough?

I read an article recently that brought it to light for me that talked about how doctors are advocating for “pain acceptance.” Doctors are now looking into pain acceptance as a treatment philosophy. It is an eye opening to see the direction this is going. As someone who has chronic pain, I find it interesting to see that not believing those with chronic pain is a new direction to go. To be told that we should learn to live with the pain is insulting. To be told that my opinion, the patient’s opinion, is not considered and the doctor’s view of my pain and condition makes me all the more fearful of doctors who don’t listen. Being told that I should just accept and live in pain, which is something I do every day, makes my and so many other voices sound like we are complainers.

It is infuriating.

If anything I have seen over these past few weeks is how many there are of us. It has shown me that we need a voice. It has shown that I matter. It has shown me more kind and compassionate people who, struggling like me, agree that we are not being heard. We have to fight our illness. We have to fight for our diagnosis. We have to sometimes fight our doctors and pharmacies and lawmakers. We have to fight to make our voices heard.

Thank you all for the pleasant company.

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