*Originally published 4/10/18*
Relationships. This is one thing people with chronic illnesses do not talk about a lot, because it is hard. Relationships in general are hard, but relationships when one of the members is sick? Those are exceptionally hard.
When you are chronically sick, your family, significant others, and friends also become your caregivers. I cannot count the number of times my family members, and even friends, have had to do the unthinkable for me. They have had to bathe me, dress me, brush my hair, carry me, take me to the restroom, drag me from the bath when I was too weak to physically get out myself. They have had to heat up my neck wrap, put my patches on my back night after night just to keep the pain at bay. My friends and family have had to give me my medicine through my PICC line, give me my vitamin b shots, and bring me my handfuls of pills when I needed them. Doing these things is not easy, and that is when the skepticism sets in.
When you have an invisible illness, you have to deal with skepticism from people, but when you have Chronic Lyme disease, you deal with skepticism from the medical world as well. We have to deal with doctors telling us we are crazy. We have to deal with insurance companies denying our treatment because they do not believe our disease exists. We have to deal with the fact that there is limited knowledge about our disease because people simply do not believe in it. When the doctors do not believe in your disease, why would other people? That is sadly one of the reasons why lymies lose relationships. I have heard so many stories from other lymies about their parents telling them to “stop faking it.” I have heard stories of teachers rejecting their disability requests because “Lyme disease does not do that.” And once people start doubting your illness, you do too. Which leads me to my next topic: our relationships with ourselves.
No one ever talks about the horrible relationship with oneself that comes along with a chronic illness. I cannot count the number of times that I have looked at my body and asked “what did I ever do to make you hate me this way?” I cannot count the number of times I have asked my mother to cut off a part of my body so I do not have to deal with that pain anymore. I cannot count the number of times I have asked if I can buy a new body because this one is defective. This is what having Lyme has done to me, and what chronic illnesses do to many others.
We come to hate our own bodies. We feel betrayed-the one thing you are supposed to be able to count on is your body, but when that fails, what are you to do? We are forced to give up things, many things. We have to change our entire lives for this illness that we did not ask for. When our relationships are hurt, it is hard for us, but we cannot blame them- sometimes we do not even want to be around ourselves. Everyone always says “do not change your life for someone” when you are in relationships, but how are you not supposed to change your entire life when the other member of the relationship is a chronic, incurable illness? This is why the suicide rate is so high for people with Lyme disease. They are left with people not believing in them, or wanting to help them, and most importantly, a body that is failing them.
I am lucky because I have the best support system out there. My family believes me, and my friends believe me. My doctors believe me. And I believe in me. Don’t get me wrong, this was not always the case. I went through many non-believers, and leavers. I also still have doubts about my own body. But I learned a long time ago to let go of the people who do not support me, and I am working on letting go of the thoughts that do not support me. It is not easy, but at some point, we all must change our minds from existing to surviving. I am at the point now that I will do anything to get healthy again-I am fighting to survive. If that means I do not go to school, so be it. If that means that I eat avocado brownies, so be it. I am ready to fight for their life I deserve, but so many of my lymie brothers and sisters do not have this luxury.
I am tired of seeing my lymie family grow and shrink at the same time. Every day I get more and more people joining my support group because they got sick. But at the same time, I see another life has been lost to this disease. If we do not increase awareness, or a cure, I fear the number of lives lost will continue to grow.
No one should have to hear people say they are crazy or it is “all in your head.” They should not have to become the patient instead of a friend. No one should have to fight for someone to believe that their illness is real. They should not have to be left with feeling like a burden to their loved ones. No one should feel rejected by their own body. They should not have to decide what is more important between having a home or their health.
This is the fight that fuels my fire. And I will not stop until relationships, and lives stop being ruined by this horrendous disease.
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