When you live with a rare disease — in my case indolent systemic mastocytosis (SM) — you have good days and you have bad ones. It’s hard to make plans, because you don’t know how you will feel when the day arrives. It’s hard also to have friends that are in perfect health, because they don’t understand what it’s like to live with a chronic illness. I just experienced this again today, as I have many times in the past few years.
When cancelling plans makes you feel even worse
This story is raw and emotional to share. I have had a bad couple of days where everything went wrong. It sent me into a deeper depression than I normally deal with. I had plans with a friend today. I had to cancel. I wanted to go — but just could not make myself get up and go through the motions of getting ready. If you don’t suffer from bouts of depression, you will not understand where I was coming from.
To make matters worse, when you have a disease like mine you know how certain friends will respond, so you dread sending them the text to cancel plans. You know what is coming next —and when you hear the ding on your phone, you don’t even want to read the message.
This morning, I got the message I was anticipating. I am “undependable.” Do you know what? That hurts. Why can’t I just get an “it’s okay” text? An “I’ll talk to you later to check on you.” An “I understand.”
I do not want to be like this. I want to get up every day and feel wonderful. I want to feel ready to face the world. I want to catch a movie, go out to eat and have a wonderful time with my friends.
I can’t explain how bad this makes me feel. I am so sorry. And then, to have someone point out repeatedly that I am undependable and always backing out of plans. That hurts. It hurts because I know I do.
I understand that I often cancel plans. I know my friends get upset. If I could change all of this, I would. But I am stuck with this disease that I battle every single day. Days I don’t get out of bed. Days that beat me down due to both physical and mental health.
I want to be normal. Believe me when I say no one wants to deal with a rare disease. We all want a normal life.
We need support, not criticism
If you have a loved one or friend with any type of health problem, please be understanding. Know that they realize what they are doing when they back out of plans. They feel bad enough already; they don’t need to hear about being undependable. Those words hurt. Just understand that they are doing the best they can. Sometimes their best is going to mean staying home, where they don’t have to pretend everything is perfect.
In a perfect world, those of us with rare diseases would never have to back out of plans. We’d wake up, put on makeup, get dressed and head out the door for a fun-filled day. We would love it!
It seems those days are behind me. It makes me sad. I look to the future and wonder, will I get to the point when I won’t want to ever go anywhere? Will my bad days outnumber the good?
Just be supportive and understanding. We already beat ourselves up enough over this; we don’t need to hear it from someone else, too. Your response will make or break the already dreadful day your friend is having. Be nice. Just love them!
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