This is a topic I don’t talk about often. In fact, I’m not sure that I’ve talked about this with much of anyone. Living with more than one chronic illness is a roller coaster. It’s like hearing a tornado on the weather report and walking right into it. Or having the flu 24 hours a day, 7 days a week, but operating as if you don’t. Don’t get me wrong, I don’t feel like that all the time. And I’m lucky to be able to manage the worst symptoms of my diseases on most days. But the other symptoms, the ones I still can’t manage, or the days where nothing seems to work? Those days are a whirlwind.
Fear. Fear is an interesting concept. Not only does it mean a variety of different things to different people, but some fears can be conquered, while others are like a tiny bug in the back of your mind and there’s no way to prove they won’t come true until the time period of the fear passes and they don’t. Those fears are not unfounded. Those fears are not unrealistic or exaggerated by fantasy or anxiety. (That’s not to say any type of fear is more real or worse than any other type, just that there are different kinds).
Living with chronic diseases introduced a lot of fear into my life in the beginning. A lot of unknowns. A lot of unanswered questions. And a lot of unresolved pain. As I’ve moved forward, and found a moderately successful treatment plan, that fear has proved itself to be less real and less scary. However, as fears often do, they morphed into future fears and general fears of living with chronic illnesses for the rest of my life.
These fears are the ones that may end up staying with me for the rest of my life. And I don’t ever really tell anyone that I’m scared of these things. But they’re always in the back of my mind, itching to come out if I give them just an ounce of attention.
That’s why this post is really hard for me to write. And furthermore, why I’m forcing myself to write it. It’s hard to admit that my health problems leave me scared of certain things. It’s hard to be honest about the possible outcomes or hurdles I might face as I get older. But I also think facing these fears could become possible and maybe that would lessen their severity. Writing all of this down, publishing it for the world to see? That’s my first step. This is the first way I know how to try to take the power away from my fears.
In no particular order, here are my top five chronic disease fears:
1. Relationships and Marriage: It’s no secret that I love love. While I’m perfectly independent and happy to be single, I prefer to be in a relationship and attempting to find the person I could marry. I’ve dealt with the men who can’t handle my illnesses or can’t find enough empathy and support within themselves to be with me. Not worth my time. However, I sometimes fear that I won’t meet someone who is able to handle me with my illnesses. Realistically, I know this isn’t true, but chronic illness fears are strong little buggers. Though the illnesses don’t define me, they are a legitimate part of my life and who I am.
2. Babies: I love kids. I was a babysitter and then a nanny for many years. Now, my niece and nephew are the lights of my life. They’re my heart and I adore them. I cannot wait to have some little munchkins of my own someday. But being pregnant, delivering, and taking care of a newborn baby terrifies me. While pregnant I would have to be off of all of my medications. Though with the hormones, researchers say that a lot of autoimmune disease sufferers go into remission at that time. During labor I could also injure myself easier than most. And after labor, it is known that autoimmune sufferers can go into a painful flare with the absence of those extra hormones. I would automatically be classified as a high risk pregnancy. All of this is far down the road, but scary nonetheless.
3. Work: My illnesses have briefly affected my work a couple times thus far. Although those times have been covered and I’m lucky to have understanding companies and upper management, it’s still worrisome. Within some of the online support groups I belong to, I am in the minority of people who work full time. I fear that someday I won’t be able to continue working full time and doing what I love. I’m young enough now to tough it out every day and ignore the pain, but I do fear that later in my career that won’t be an option.
4. Permanent Damage: Having permanent damage to my spine or other parts of my body is naturally a major fear of mine. Luckily, the Remicade is preventing that from happening. But the nature of my disease is a fusing of the spine when left untreated or uncontrolled. I’m terrified I’ll end up bedridden or in some form or another not able to move around normally due to a damaged spine. I just knock on wood every day that my body never decides to start rejecting the Remicade.
5. Side Effects/Immune System Deficiencies/Sick: Due to being on Remicade and having immunodeficiency as a whole, I am susceptible to a number of health issues. By itself, Remicade suppresses my immune system. I also do not have the antibodies to fight off certain illnesses due to my immunodeficiency. This always scares me because I don’t want to get too sick and I’m prone to catch most of what is going around. On top of that, the side effects of my medications are serious and scary, though rare. The longer I’m on Remicade, the higher my chances of developing cancer and other issues. I try not to think about that day to day because the medication is saving me for now. But I hope to not have to face this fear in the future.
Phew. Keeping in theme with this post–that was scary. Writing those down makes me feel pretty raw and naked, but I’m hoping that sharing them and being completely honest about my chronic illness fears will make them less intimidating and less real for me.
Sorry for such a heavy post this time! But I think it helps to get these fears out in the open. Though I might have to face some of them square in the eyes later in life, maybe writing them down for the world is the first step in beating them.