Invisible but not Rare

Invisible but not Rare

As a staff writer at RARE., I was drawn into the brand because I believed in its mission.  I believed that rare diseases needed a spotlight and those who suffer from them deserve so much more than life or health care providers were giving them.  This was before I started to get sick. This was before I had to take more time off work in the past two months than I’ve taken in the past 2 years. This was before my life was seriously impacted by an invisible illness which put my life and choices right in the path of judgement and scrutiny.  

Invisible illnesses (or disabilities) are defined as chronic illness that significantly impair normal activities of daily living.  These invisible illnesses could be defined as chronic illnesses like IBS, MS, Crohn’s, depression, anxiety, fibromyalgia, chronic pain, and for me endometriosis.  Everyone’s experiences are different, but there are certain things about having a chronic invisible illness that remains the same.

Living with an Invisible Illness

  1. The feeling like it is all in your head.  Because the pain and discomfort is only known by you, it is hard for others to see it.  In addition, there may be times when it is difficult for doctors to see it too. After feeling like something is wrong, we all turn to the internet.  Knowledge is one the most important tools you can have, but also the internet is a very scary place. Eventually it can feel like the pain gets worse, or that we read into our bodies what we see on the internet.  It can begin to feel like it’s all in your head. But it’s not. You’re not crazy and the pain is real.

  2. It starts slowly and then it’s suddenly there.  Most of the time these illnesses slowly creep up on our lives until it becomes difficult to remember what it was like before.  What did it feel like to wake up in the morning and not feel pain? When was the last time I was excited to go see a friend? All of a sudden, we can look around at our lives and see all that we’ve had to leave behind.  There will always be the before and after you. However, we still have the choice of what our after looks like. And be kind to yourself for not being able to go back to before.

  3. So many doctors, yet so few answers.  Everyone expects it to be one doctor, one appointment, one answer, and fixed.  This is not the truth. Many times it takes multiple doctors, a number of wrong diagnosis, some quick fixes, and the ultimate battle to find a treatment that works.  The wait between doctors’ appointments and the wait between all the different tests is maddening. When it feels like your world is falling apart, it feels unreal that the health care system moves so slow.  

  4. Everyone has an opinion.  Truth be told, no one really understands your illness but you.  People may try to empathize and work with you, but no one really gets it.  Because of this, there will be a lot of people in your life who know better than you.  Know what you should eat, how you should spend your time, and what doctors to go to. Even the most well-meaning people in our lives say and give the most annoying advice.  In case you accidentally say, “You don’t think I’ve thought about that already?” take a deep breath. People will just never know your life, and that’s okay.

  5. The only cure is life.  For many of these illnesses there is no cure, no fix, no one pill to make it better.  Many of these are caused by some unknown inflammation or have an autoimmune component.  Even if there are treatments available, some are experimental, some are no covered by insurance, and not all treatments work for everyone.  Diagnosis is only the beginning of a long road to finding a treatment that works, or at least makes life more manageable. When someone says, “At least you know what it is now,” I know that it is supposed to make me feel better, but I feel myself standing at the bottom of the tallest mountain I can’t even imagine.  The only cure is to keep living and find what works for you.

While I do not have a rare disease, RARE. is where I belong. This is where I can be free of judgement for my treatment, my choices, and how I live my life. Need someone to understand? Maybe share with them this list, while not entirely inclusive of all that you live with, it’s a good place to start the conversation. Because, you don’t know til you know, ya know.

1 comment

  • Shannon

    1 and 3 resonate so much with me. As a person who deals with MS, most times I always question my sanity. I know I do not feel well, but others cannot see it and more often than not, do not understand. To them, I look fine, but I am suffering on the inside. Dealing with doctors is the absolute worst in all honesty. While I am grateful I was able to be diagnosed in a relatively short period of time, it was because of my persistence not because of a doctor trying to help me. It was me asking to a spinal tap (not fun) because I knew something was wrong and just waiting around for another episode to occur seemed ridiculous to me. So I need to get sicker to finally get the help that I need? Most doctors decide to be reactivate when they should really be proactive and it’s beyond sad. And to find a doctor that actually listens takes so much time and weeding through the ones who pass you off. My MS is not like others MS, we are all different, just because one thing works for someone else does not mean it will work for me, and I wish doctors would understand that.

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