Chronic Disease and The Family Members Who “Don’t Get It”

In the last few years my family has been through a lot of changes and challenges. Going through the ups and downs of my disease—well, it really brought to light who was in it for the long run. There’s a lot of people in my family I have no communication with at all. And there will never be a moment where I don’t find that fact devastating. There are a variety of reasons why I’ve cut off contact with some of these people—but I think what it really boils down to is that they were either annoyed or combative or just plain uneducated with no desire to learn about my illness. And they didn’t want to hear about it, they weren’t interested in supporting me. I think some of them thought it was going to “enable” me to continue making excuses for my health.

It’s one of the the realities that drives me towards work in the advocacy world. I know what it’s like to be rejected for something that exists in your life, that you have no control over.

I started this blog because I wanted to tell people what life with a complex, chronic disease was like. I wanted to show them that not every day was a pity party. I wanted to assure them that I would grow up, get my education, pay my own bills, find love, get married, have a family—that even though I had this disease and it greatly impacted my lifestyle—it didn’t make me any less me.

But frankly not everyone really gives a shit, has the compassion, time, energy, or emotional bandwidth to deal with someone who is constantly going through draining, life-altering symptoms and treatment. Not all relationships make it through a chronic illness—and that’s the honest truth.

But for those who hang in there? The love is truly overwhelming.

My mom and my sister feel like the other halves my soul. They are the most inspiring, beautiful, and powerful women I’ve ever met. The storms we’ve weathered together as a family—I don’t think there is any situation strong enough to break our bond. Life would be unimaginable without them there to share it with. Before my Grandfather passed, he was one of my biggest champions and I felt driven to do great things because it brought him such crazy happiness from every milestone I conquered in my life. But I never really needed to prove myself to him or any of my supportive family. They loved me through it all. And to someone facing chronic illness that makes all the difference in whether or not you can face a new day after a bad flare.

However, you have to remain open to the idea that people are not always going to react to your disease in the way you hope they will. And even those who end up being your strongest supporters can go through periods of doubt, frustration, and grief of their own before being able to be a part of your support network.

And while you may want to immediately shut the door on anyone who thinks you are

  • faking your disease
  • causing your disease by your lifestyle
  • not trying hard enough to get better
  • wasting precious time and resources
  • or (and this one is a doozy) not “reacting” positively to their medical suggestions (IE: the diet they told you to try failed to relieve all of your symptoms, the doctor they recommended didn’t adequately manage your disease so that you were 100% cured, etc.)

…you must keep the door to awareness open. Even when they continuously slam it shut, right in your face. People who do not have a chronic illness take time to truly understand what it is, how it impacts a person, and most importantly that it may not “get better” or may even progress over time.

It may make you want to scream, but for the most part, people are just trying to help. It is miserable to see someone you love experience a chronic disease. To feel helpless to help them. To feel like, if it were their body, they would have it under control. They mean well. As frustratingly as they choose to act on it—generally these responses come from a place of desperation to help you.

It is easy to quit loving someone when they stop meeting your expectations. And that goes both ways. I’ve seen people completely flip from being just incredibly unsupportive assholes to having something in their own lives make it impossible for them to not understand your situation.

And while you never hope that someone in your life will have to experience your challenges to understand them— you’ll certainly want that door to be open.

When I first started this blog I prayed and prayed that some of the more unsupportive people in my family would read it and have a change of heart. Instead, I had people I barely knew in high school reaching out to me with support. I had neighbors knock on my door and tell me they were following my journey. My life opened up to a whole new support network and it’s sustained my heart for so many years, through hospitalizations and depression.

I will never not want every person in my family to be a part of my life. Not even just those who were passively unsupportive about my disease, but also those who I have had to “block” because their response wasn’t just unsupportive— but also unrelentingly mean.

I know this is something all patients struggle with. I would love to hear your stories.

What was your family’s response to your diagnoses?

What made you end relationships with family members through the course of your disease?

What advice do you have for other patients struggling to earn support from their relatives?