But whose fault is it?
My battle with chronic illness did not come on slowly. It was more like being hit with a freight train. I went in to have a necessary orthopedic surgery with an expected 1–2 night stay in the hospital. I regained consciousness almost 3 days later. I spent 10 days in the hospital and most of those in I.C.U.
I had developed acute heart failure while under anesthesia and both my lungs had filled with fluid. I had no prior significant health history. No warning signs. When I left the hospital, my heart was functioning at 17% capacity.
I won’t take you through the long and complex journey except to say that my heart function did improve and I was eventually diagnosed with Adrenal Insufficiency (AI). AI is a chronic disease managed by steroids for the rest of my life and that takes a toll on various other systems like bone health. I had a minor fall this spring that resulted in a compression fracture of my lower spine.
Accidents, sudden illnesses like a stomach virus or the flu and various other random things can cause an adrenal crisis. An adrenal crisis is fatal if not treated in time. I am lucky. Most days, the only part of my illness I have to acknowledge is the need to take steroids and then I go on about my day. But, like any chronic illness, other days are much more challenging.
I cannot do many of the things that I once enjoyed (this is a combination of AI, cardiomyopathy and orthopedic issues). For the most part, my family and I move on with our lives much like it was before. I just have to do things differently. I have to take things slower.
Impact on relationships
What no one talks about much is how isolating it can be. Friends and family try, but I get tired of saying “sorry, I just can’t today” before they get tired of asking. So, I find myself pushing people away.
I don’t invest in friendships the way I once did. That is completely on me. No one has pushed me away because I was sick. I pulled away from them instead.
Even with those closest to me, I find myself not being honest. Let’s not sugar coat it. I lie. I say I am fine when my bp is ridiculously low; I am almost passing out every time I stand up and my pain level is through the roof. I. Am. Fine.
This puts distance between me and even my closest family. After all, if I am fine then why do I just want to lie on the couch curled around a book instead of getting up and being a wife and mom like I used to be?
I see other people talk and share so openly about their chronic illness. I admire their courage and I wonder what I am afraid of. I know some of the things that keep me cocooned in silence.
· The never-ending diet advice. There is a diet to cure almost everything now. If I would only go gluten-free, Keto, vegan, organic, etc., then I could reverse this. I am a believer that what we eat matters in how we feel and certainly in weight management. But it won’t cure cardiomyopathy or AI.
· The “other person they know with this disease….” If I ever meet this mysterious person I will throat punch them. It doesn’t even have to be the same disease, or in the same family of diseases. They can make what happened to this “other person” fit my scenario. The unspoken message is “if they can do it, why can’t you?”
· The “I don’t know how you do it.” Well, I wasn’t given a choice. That is how I do it. I didn’t sign up for it, but it is the hand that was dealt. I am no hero for getting up and getting on with my life on the days my body cooperates.
· My favorite “well, you are fortunate it isn’t something more serious.” I have friends battling cancer; I have lost loved ones to that horrid monster. I know my prognosis could be so much worse and I am grateful. That doesn’t change how I feel on the crappy days. I can be thankful to not have “something worse” but it doesn’t change how my body feels today.
If you know someone with a chronic illness please don’t be afraid to ask questions about it. They could probably use someone to talk to about it. That said; please keep your advice and judgment to yourself.
I don’t want to make it sound like a mind field of things you can and cannot say to someone with a chronic illness. I am not thin-skinned. It is just after hearing these things over and over again some of us run out of energy to educate, argue, or try to change your mind. Usually, I just smile and nod politely and change the subject.
Not everyone says these things, and I have pushed them away anyway. Why? Why, when I need friendship and support more than ever, did I start to isolate myself? I have thought long and hard about this. The answer isn’t pretty and is not something I am proud of.
I am a caretaker. That is what I do, and no matter how much I tell myself it is stupid, I despise the idea of being seen as weak or needy or incompetent. Ridiculous isn’t it? That is the crux of the issue. I do not want people to see my weakness.
Chronic illness takes a toll on mental health. Maybe that is a painful truth I have been trying to hide, even from myself. I am not as mentally healthy now as I was before I got sick. I am stronger in some ways now. What I have been through will do that to a person. I am, however, learning that strength does not equal mental health. Sometimes, we need to allow ourselves to be weak.
I read a lot of articles about chronic illness and how it affects relationships. Most of the articles put the blame squarely on the friends or family who just couldn’t get it. Some stopped calling because you never felt up to going out, or the family members who walked away because they didn’t want to cope. That may be their story, but it isn’t mine.
My story is that I put up barriers to keep me safe from the judgment that would never come from the people who matter. Even if it did, I care enough about them to forgive them and move on. Except my pride gets in the way of saying “I am too sick to do that right now.”
So, to my friends, my family, my tribe, I am sorry. I am sorry that I don’t trust you with my illnesses. I am sorry that I don’t let you into my real life. You only see me on the days when I am doing well or I am faking hard. It isn’t you. It is me.
I am working on it. I am doing more and if I crash halfway through the day, so what? I crashed and need rest. It isn’t the end of the world.
For the ones that are still here, close to me, pushing to be inside my new world, come on in. It is messy, chaotic and filled with ups and downs. Welcome to the new me, and thank you for hanging around.
I am trying to say “I am fine,” less but without turning into a constant complainer. It is a ridiculously fine line to walk. So, call me on it. Tell me you are sorry that my energy level is in the toilet and remind me it doesn’t take much energy to enjoy coffee together. (But that means I have to let you into my once immaculate and now messy home….another thing to work on).
Oh, and one last thing. Some days, it isn’t my body but my mind that won’t let me be who I used to be. See, having a chronic illness puts you into a kind of static state of grief. Not the gut-wrenching, heartbreaking grief of losing someone you care about. A more gentle, but ever-present grief for what your body once was.
I keep that locked down pretty tight, but some days it just won’t let me go.
There it is. The whole messy, ugly truth behind my version of chronic illness, on display for the entire world (or at least the few people who will read it on Peerdiy. I don’t yet have the courage to share it with the exact friends and family I am talking about. One step at a time).