7 Things to Remember When You Love Someone with Chronic Illness

Chronic illness has been a part of my life for the last 13 years. While I am highly functioning now, there was a time I couldn’t stand upright, felt dizzy, nauseous and exhausted all the time, couldn’t swallow solid food, couldn’t sweat, couldn’t tolerate fluorescent lights. The list goes on and on, but I think you get the point. My life sucked. And by default, those who loved me endured the suck as well.

Some of them embraced the suck and others fell to the wayside. I’m assuming it was because they couldn’t handle it and I don’t blame them. I couldn’t really handle it either.

But I didn’t have a choice. In fact, I had to learn how to rely on these people in my circle to survive and they had to learn how to be relied upon even when they didn’t want to, didn’t have time or couldn’t. Sounds like a real party now, doesn’t it?

I still suffer from P.O.T.S. symptoms from time to time but overall, I can do life on my own. Recently, I was asked to consider some of the top things that helped me through the peak of my hellish life. There are many supplements, exercises and miscellaneous things that were critical to my recovery, but I would rank the help of my tribe high up on the list. They didn’t ask for my illness to be on their daily to-do list for 7 years, but they accommodated me, and I am certain the support I did have contributed immensely to my miraculous recovery.

If you love someone with chronic illness, here are the top 7 things to remember:

1. We like to hear from you. Sometimes our illnesses leave us in bed all day or on the couch binge watching the latest on Netflix for hours at a time. While this leaves our lives uneventful and sets us up to be labeled as the laziest breed of people on Earth, we still like to hear from the outside world. Don’t be afraid to call, email or drop a note in the mail. Even something as simple as a funny text can make all the difference when we’re feeling isolated.

2. Invite us to stuff. I’m going to go out on a limb and say that 99.99% of the time, we won’t be able to make it but the invitation itself is so powerful and symbolic. It says Hey, we know your life is kind of a freaking disaster right now, but we love you, are thinking of you and wish you could make it to this grand event that you’ll only enjoy in pictures. The day I stopped getting invited was the day I felt I might as well have been dead already. Invite your people!

3. Accept when we can’t go to that event, that date night, that dinner party, etc. Trust me, it already sucks bad enough that we’re missing out on a big chunk of life but when you make us feel bad for missing another thing scheduled on the calendar, we feel worse. And when we feel worse emotionally, this can exacerbate our physical symptoms. We don’t want to miss out on grandma gettin’ down at her 85th birthday bash but we don’t want to show up and end up curled up in a ball with the rest of the freaks from table 19 because we can’t function. That’s not fun for anyone.

A little side note: Be ready to accept the fact that two days later we may have enough energy to hit the club. Most of us can never predict what days will be good and what days will be bad. Just enjoy the good ones with us when they come. We promise we’re not trying to use the “sick card” to get out of anyone’s wedding. Only the ones you don’t want to go to anyway. *wink, wink*

4. Hug us. Not only does this give us a chance to have human contact and connection but hugging increases the feel-good hormones for both parties. Think of it like the best dose of medicine you could give us. Some of us experience widespread pain so bare this in mind when hugging extra tight. I’d hate to use my pepper spray on someone running up to my crippled self from behind in a show of affection only to get blasted to the ground in agonizing, peppery pain because you scared and hurt me.

5. Stop being weird. No seriously, stop. We just want you to treat us like we’re normal. For whatever that’s worth. Especially because the rest of the world likely doesn’t do that now. You should see the stares that come with letting your toddler ride on your lap in the motorized cart when you look fine on the outside or when you’re 22 years old and dragging oxygen behind you and rocking compression socks. Our doctors act like we’re weird enough with our mile-long list of ever-changing symptoms so please, keep treating us like the same old person we’ve always been.

6. Pay attention to what’s happening in our life. When conversing and you hear us mention a test, new medication we’re starting or procedure happening next week, ask us about it next time you see us. Do I really expect you to remember my medical schedule? No. Half the time I can’t keep the appointments straight myself but maybe make a little note in your phone with an alarm to call that day. It really does mean the world to us.

7. Please stop saying “It’s going to be okay” or “It could always be worse”. We know you mean well. We do. But when you say that, it makes what we’re going through on the inside feel diminished and insignificant. Instead, try saying, “This really sucks” or “Your hospital socks you’re still wearing from two weeks ago are hideous. We should bedazzle them” or “What kind of dry shampoo can I pick up for you next time I’m at the store so we can tame that rats’ nest on your head”. Just keep it real.

It’s as easy as that. Keep it real. Keep us laughing. Remind us we’re still important and alive. Your determination to show us love could literally save our quality of life. Who knew you were destined to be someone’s hero? Now straighten that cape and be proud of your efforts. You are so much more appreciated than you know.

Brittany Hollinshead

Written by

Brittany is an empath and spiritual transformation coach, U.S. Army veteran, former Mrs. Utah America, Dysautonomia Awareness Advocate and mother to four.

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