People with chronic illnesses need all the support they can get- especially from their family. Here are some tips for truly supporting them.
1. Don’t Just Support Strangers, Support Your Family
Most of my family are generous caring people- especially towards strangers. I regularly see them support children they don’t know and throw fundraisers for complete strangers. I am glad they do this and in that way, I am proud of them. However, to see that they can and do support others sends me the message that I am not worthy of their support. That my problems aren’t worth supporting.
At a certain point, it felt obvious that I am not important and my problems are inconsequential in their minds. It isn’t even just about supporting me. If saving the sick children is important to my family, what about the sick kids with the same condition as me? What about the ones with less understood conditions? The ones who take an average of 6 years of pain and struggle to diagnose? There is room to support all of us- not just the people with better known and better-understood illnesses.
Seeing them support strangers so completely and not supporting me at all is far more disheartening than you can imagine. I don’t know if I should interpret it as not caring or as not knowing what to do, but shouldn’t they ask?
2. Listen To Their Warnings of Serious Genetic Conditions
A few years ago I was diagnosed with Ehler’s Danlos, a genetic condition where affecting collagen and therefore joints and muscles. People with EDS often have severe pain and a lesser quality of life.
The fact that I have EDS means that it is highly likely that other family members have it as well. However, when I have warned my family that they should see if they have it (for themselves and for having children) I have been ignored.
No one wants bad news, but ignoring me makes me feel like they don’t value anything I say or take my health concerns seriously.
Ignoring my warnings isn’t just hurtful to me- it is irresponsibly putting my family’s possible children at risk. The decision to have kids when you have a severe genetic illness should be an informed one.
There is an arrogant and ignorant attitude of “that could never happen to me” surrounding illness that is just going to end up hurting my family further. Try to be conscientious of this attitude and take your family members warnings seriously. Hear them out. They need to be heard.
3. Provide More Than Empty Support
By actions, I often feel poorly supported by my extended family, but by words, I am very supported. So many family members have told me they are “here for me” or “to let them know if I ever need anything.” It is a nice sentiment, but unfortunately, too often that is all it is. When I actually reach out for support, I am too often ignored.
With a chronic illness, people often tell you they are there to support you because it makes them feel better about themselves rather than actually helping you. They even delude themselves into thinking they are legitimately helping support you with words, thoughts, and prayers. If you actually want to be supportive, reach out to your sick loved one and ask what you can do to help. Listen to them rant. Ask them how they are.
4. Talk To Them, Not About Them
I haven’t talked to most of my extended family in years. When I got sick they stopped talking to me. Now they only talk to other family members about me.
Asking people how they are lets them know you care. Even if you say something wrong or don’t know what to say, most of us can forgive a lot (see below), and intent has a lot to do with how you are received. If people genuinely are trying to be supportive I am more willing to see that effort instead of the things they do wrong.
5. Educate Yourself on Our Condition
Understanding is a huge part of being able to support people through a chronic illness. The single best thing that has helped me get the support I need is educating the people around me. That is a big part of the reason I write articles for Chronically Ridiculous and why I am working on a book on POTS.
However, education does no good when no one will read it or seek it. So learn about your family member’s condition. Learn about life with a chronic illness. Read the spoon theory. Their illness has become a huge part of their lives; understanding it is paramount to being in their lives and supporting them.
6. Think & Educate Yourself Before You Speak
I have heard or heard about a lot of ignorant and sometimes cruel things my family has said. Some have been apologized for and I do not hold a grudge- I just hope to share my experience. However, more have not been apologized for and I doubt some family members even gave it a second thought that their words could be hurtful.
It is your fault you had a blood clot in your lungs and almost died because you took birth control. You are being punished by god- that is why you are sick.
Modern medicine shouldn’t have kept you alive because overpopulation is a big problem.
God never gives you more than you can handle. You must be overreacting.
Maybe you should try to take less medicine.
I cannot even imagine what you are putting your parents through.
You are too young to be sick.
Ugh did she really faint again?
You are lucky you get to lay around all day.
Maybe if you just tried not thinking like you are sick you would feel better.
Mind over matter! Toughen up!
Every single one of these things likely would be left unsaid if people educated themselves before speaking, but they didn’t and now I have to live with their cruel words.
7. Never Thank Others For “Putting Up With My Illness”
Our society looks down on the disabled; they see us as burdens to humanity. Dealing with this attitude has been the hardest things about having a chronic illness. Having my family treat those around me as if they are doing me a favor by being my life has been terrible.
For example, in a past relationship, my boyfriend of a year and I broke up because we fell for other people. My sister didn’t talk to me about the breakup or ask if I was okay. Instead, she reached out to my ex and thanked him for putting up with me for as long as he did. It has been a couple years and I still feel heartbroken when thinking about it.
So let’s clear this up- having a loved one with a chronic illness is hard. No one is denying that. That being said, no one is doing me a favor by being in my life. I am loving and care so deeply about the people I love; I would do anything for the people I love. My chronic illness has taught me a level of compassion and empathy I rarely see in others. I am smart, funny, and basically all-around awesome (and modest too, can’t you tell?). I am worth keeping in people’s lives- chronically ill or not.
Most people who are chronically ill are worth having in your life and acting like they are not is one of the worst things you can do to them. Most of us are consumed by the worry that we are burdens already. I have known numerous people who have committed suicide because they felt this way.
Everyone has problems and baggage that make it harder for loved ones to keep in their lives. The real problem occurs when we fail to see people as more than their baggage.
8. Invite Them.
Even if you don’t think your family member’s health is good enough to come to the next family gathering/ reunion- invite them. They know their health and what they are up to better than you can.
The fact that we consistently miss out on social gatherings is such a difficult thing to deal with. Too often, we stop being invited to things and then have nothing to do when we do feel up to these gatherings.
Recently, I found out a large chunk of my family had a reunion that no one mentioned to me. Even though it wasn’t the first time this had happened, I was devastated. I don’t know if I could have gone; I do know that I wanted the opportunity to try.
9. Reach Out To Them Again.
I have a condition that affects the pressure in my brain, Pseudotumor cerebri. When the pressure gets too high, my brain reacts as if I have a brain tumor even though I do not. I often cannot remember things. I have chunks of my life that I don’t have a single concrete memory of. I also have a condition, POTS, that leads to me consistently not having enough blood pumped to my brain.
With my combined conditions, I forget a lot. I am sure there have been instances of people reaching out that I cannot remember. Instead of assuming you are being ignored because your family member hasn’t replied, try again. A lot of my family members regularly get upset with me for not responding to things that I simply don’t remember. Keep trying. Don’t give up on us. Be our memory when we don’t have one left.