I Choose to Surround Myself With People Who Understand My Chronic Illness

For me, having a chronic illness is an exercise in loneliness. I’m not just lonely when there aren’t people surrounding me. I’m lonely even in a crowd — even when I’m surrounded by friends and family.

Some people might not understand the isolation that accompanies illness. When you’re smack dab in the middle of your own challenges, it seems like no one can truly understand how you feel.

After all, they aren’t the ones struggling to walk five feet to the bathroom. They aren’t the ones fearing what the next moment will hold for them. Will they have to lie down on the ground like I do to avoid fainting? Will they have to apologize day after day for breaking plans or appointments? Will they feel the guilt? Will they understand what it feels like to live in a body that doesn’t work for them? Will they ever be troubled by memories of their healthier selves? The short answer is no.

The people I’m surrounded by are all fortunately fairly healthy. They can drive without having to pull over often, they can work full-time jobs, they can raise families and they can walk their dogs without getting so tired that they have to recuperate for two hours afterwards. Something as simple as taking a shower isn’t a challenge to them, and I pretty much guarantee they don’t have to rise from bed in half-inch increments to avoid becoming faint.

And while I don’t mean to sound critical the state of their healthy bodies, I feel very much alone within myself. Sometimes, it feels like I’m the only person who is in pain. But this is the farthest thing from the truth. Over the years, I have met hundreds of people just like me, and I know I’m not alone. There are people who not only have dysautonomia and Ehlers-Danlos syndrome, but also have other illnesses or conditions that take them down and stomp on every wish they ever had. I know the challenges I face aren’t unique to me. I am truly grateful to have met so many warriors who fight so many quiet battles — battles we know nothing about.

So yes, I am lonely. I’m lonely often, and if I can be completely honest, I don’t think there is ever a time when the hovering cloud of loneliness doesn’t saturate every moment of every day.

Many chronically ill people are blessed to have the support of family and friends. However, even within families there may be those who belittle, minimize and are oblivious to the problems you face. They are toxic in many ways. Even after years of trying to educate family about your illness, it always seems like there’s something more to prove to certain individuals.

After many years of hurt feelings and headaches and tears, I learned that some people aren’t worth the precious energy I have. I simply do not have any more to give. It took me a long time to develop this strength, and I’m very proud of what I have learned. It feels liberating to know that I don’t have to prove anything to anyone ever again.

It has been my experience that most people are sincere and seem very eager to help. But occasionally, there are those who deplete my energy. My emotional stamina seems to dwindle and at the end of the day, and I feel like I just want to crawl under a blanket and disappear. Toxic people often produce these feelings.

When I’m surrounded by the “toxins,” I feel I have every right to say, “No, I will not allow you to poison me,” and decline an invitation or a visit at their home. Recently, when I exercised this right, it was made clear to me that I should be happy that people are visiting me or inviting me somewhere, as if to say, “You’re sick and lonely. You should be honored that they’re here because at least it’s someone.” In other words, beggars can’t be choosers.

three friends pose together for a photo

But the truth is, I can choose. I can choose who I spend my very precious energy on. Yes, I am sick. I am lonely. But I want to surround myself with people who truly understand who I am and what I need. I want someone to visit me because we enjoy each others’ company and genuinely laugh together at silly things. I don’t, however, want some contrived visit by someone who really doesn’t understand me, devalues me or just isn’t very nice. This isn’t to say that I only want to be surrounded by people who can write a dissertation on postural orthostatic tachycardia syndrome (POTS). I just want respect.

I deserve to fill my life with genuine love and caring. I want to be a light for someone else’s darkness. I want to know that I may not have control over my body, but I do have control over what I feed it emotionally and spiritually. I don’t need to be depleted further by people who just don’t know how to care, those who “don’t have time” or those who need to fulfill some familial obligation. I’m worth more than that. 

I stay at home a lot because on most days, my body just can’t handle going to the grocery store or even taking a short drive. I’d love to be out doing what I’d like to do rather than what I have to do, which is resting and taking my life one step at a time. I’m home often. My door is always open to those who have the ability to love and accept love from me. But every once in a while, I have to shut the door. And that’s OK.

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