When the Stigma of Your Invisible Illness Causes Self-Blame
Leah Young
Lyme Disease
Being diagnosed with a chronic invisible illness in your teens is a cruel happening. At a time in your life when you are supposed to be finding your footing and growing, it feels like any sense of normalcy is ripped away from you. You mature faster because you are not given a choice, you have an understanding that life does not always treat you nicely or fairly, and you learn early on that you must adjust, no matter how frustrating and heartbreaking the circumstances.
Although harder than anything I have ever experienced in my life, I expected the physical symptoms, as I had already been dealing with them for years. I was in the throes of getting pieces of my personal identity ripped away from me as the physical symptoms chipped away at my ability to do the things in my life that made me feel like me. I watched my life come to a standstill as others moved forward. Feeling as though I was losing myself and being unable to control it was truly depressing and anxiety inducing, as these feelings existed on an already low moral due to dealing with debilitating symptoms that have ebbed and flowed for years.
What I did not expect was the widespread disbelief about the severity of my illness. I don’t mean the disbelief from insurance companies and doctors, because after a while you learn to laugh that off. I’m talking about the disbelief from people around you. Invisible illnesses are just that, invisible. You often times do not look sick or act sick, leading others to believe that you are just fine. So when you try to talk about how you’re feeling, others look at you and think you are a complainer, a pity seeker, a negative toxic person, etc. I myself was silenced many times, and believed the criticism about me to be true. My self-confidence dwindled. I blamed myself for not handling the disease as others thought I should be. My brain became a playground for negative and critical thoughts about myself. I blamed myself for things that were not my fault, and I shouldn’t have. And you shouldn’t either.
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It is in the nature of chronic Lyme disease to change your hormones, change your personality, turn off parts of your brain, create complete rages, and take control of what was once yours: Your brain. This is true of almost any other mental illness. This is true of many other invisible and chronic diseases. At the end of the day, you are responsible for trying to figure out how you can manage the random anger, the anxiety, the depression, etc. as best that you can. But you are not responsible for these things happening to you. You did not ask for it.
To put this into perspective, no one would ever look at a cancer patient and say, “There’s no reason for you to be feeling sick right now,” so why would anyone look at someone else struggling with a mental or other invisible illness and say that? Society has created a world where having certain illnesses means you have the right to feel what you feel, but will not recognize other illnesses on the same magnitude, because they can’t see the effects. That is the stigma. You are not your illness, but I understand as I’m sure the rest of you do, that at times your behavior and actions cannot be helped.
No matter what invisible illness you have, it is important to remember that you are doing your best. You are doing your best to stay afloat, you are doing your best to get up in the morning, you are doing your best to put one foot in front of the other. You are trying. Trying to stay strong and smile. Trying to reach out. Trying to stay who you are.
I am not telling you that using someone as your personal punching bag or your only source of happiness is something you should do. There are professionals to talk to, and steps you can take to further your mental healing. However, just like I said above, people mistake you talking about your illness or dealing with the negative effects of your illness as complaining, pity-seeking and peg you as a toxic, negative person. So, what I am saying is that you are not any of these things for needing support, for needing or wanting to talk or vent about what you’re going through, and for wanting to spread awareness.
As many who struggle with invisible illnesses know, the first few years are the hardest. You don’t need to apologize for what you had to do to survive. For the ways in which you have had to change. Not to anyone. You have likely become a more empathetic person for going through your illness, and you know better than anyone that you cannot ever judge someone until you have felt what they feel, until you have faced what they have. You are not weak for talking about how you feel, you are strong. You are not negative, you are human.
People will criticize you and say you could be doing better; they’ll say you shouldn’t be this or you shouldn’t be that. People will walk away and treat you differently during your time of struggle because they don’t want to deal with it. Let them. These are people who have not taken the time to try to understand. New people will enter your life, and they will understand that you are doing the best you can.
Hold on to the positive parts of yourself. You are not toxic and you do not spread despair. You did not ask for this. You are coping. You are allowed to ask for support. You are allowed to ask for help. You are allowed to be sad. You are not your illness, but it is OK to welcome it as a part of your life, because as much as it has made so many things hard, it has also made you a stronger, more caring person. When you stop criticizing yourself, you can let the self-love back in.
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Many Blessings,
CrystalRiver
