We Need to Respect How Others Manage Their Chronic Illnesses


Lately, I’ve become more aware of something troubling. It’s not new or immediately dangerous, but it is insidious. Many people, healthy and ill, are sitting in judgment of others’ health management. Within the chronic illness community, this issue creates tension and extreme caution. Should I share this big development? Will someone relate to this, or will they try to tear me down? While going through appointments, treatments and hospitalizations, the weight of the decision to be open about health ups and downs increases. Personally, I’m choosing to stand up (well, sit) and talk about it instead of retreating.

 

As I’ve said, unsolicited judgment of fellow patients is nothing new. Several years ago I was involved in a chronic illness support group for teens. For the most part, it was a positive experience. However, it only took a few inflammatory participants to cause discord. Since I was already tired and ill, I decided that the risk of super negative or weirdly competitive interactions wasn’t worth the emotional cost. In a way, the decision to be less involved in chronic illness groups until quite recently was part of my health management. The risk of emotional danger appears to be especially high for teens, some of whom are newly diagnosed. Knowing that stress makes many of my conditions worse, I chose to go about my life and reduce my online presence while I came to terms with my medical conditions.

Maybe I forgot how intense it could be, or perhaps I hoped it had changed, but the undercurrent of judgment is still around. Amongst “spoonies” of all ages, that skeptical tone creeps into the conversation. Instead of trying to persuade another person to say no to opioids or medical marijuana, we need to be sympathetic to their very real pain. Rather than chastising someone for posting tough updates or unpleasing pictures, we must remember that sharing their struggle can help lessen their individual burden. Those are the moments when love must rush in, not negativity.

My own blog and Instagram posts are mostly bright, intentionally positive images. Right now, that’s my comfortable tone. Does that mean my words about the toughest parts of my conditions are untrue? Nope. Do I necessarily feel better than the person who chooses to document their struggle in strikingly raw images? Yeah, no. Just because two…or 20…or 200 patients have the same illness doesn’t mean their approaches to management and sharing will be identical. That’s part of being human; we’re not robots. Our bodies are similarly flawed and glitchy, but we are individuals leading amazingly varied lives. Let’s celebrate the spectrum of constructive techniques, and be thankful for the support of our online and offline communities.

Despite my past experiences and current concerns, I believe that patient-to-patient support is invaluable. There’s truly nothing like chatting with someone who gets your jokes and relates to your experiences. In fact, I love seeing the way that two people still reach out to support each other when they’re both dealing with major health setbacks. Connecting with each other, motivating each other and sharing our toughest days are parts of what make chronic illness communities strong. I’ll stick around, and I’ll keep choosing encouragement over judgment.

Follow this journey on Maria Gracefully.

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Thinkstock photo via Martinan.


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