Your Health, Your Business

As someone who has gone through many different health challenges through the years, I’m used to people talking about my medical life. Now, that doesn’t mean that I like people talking about me, especially behind my back, but it happens. As I’ve grown up, I’ve had to voice my opinions on the matter, setting clear boundaries as to what may be shared and what I’d rather keep private, especially with my family.

Here’s the truth of the matter: Your health is YOUR business. Sure, it may be necessary for caregivers to know about the details of your medical life so that they can better help you, but as far as sharing beyond that, it should absolutely be up to you. Maybe it’s just me, but I really don’t like hearing from someone that so-and-so told them about my struggles, or reading a post on Facebook detailing my current health dilemma. I’d rather tell people myself so that I can control what is being said.

As a relative of mine was talking about another family member’s health issues yesterday behind their back, I started to get angry. I couldn’t just sit there and listen as she criticized his diet and lifestyle, blaming him for his health problems and talking about what a shame it is that his health is the way it is. Knowing that there are deeper causes for his illness, and being tired of people saying similar things about my health behind my back, I had to step in. “Excuse me, but why are we talking about this? I know that I don’t like it when people talk about my medical life, behind or in front of my back, so I don’t think you should be talking about his health behind his back.” She claimed she was “just concerned” about him, but to me, it felt more like gossiping while using “concern” as a cover-up. There are some situations where I just can’t sit back and listen.

Here are some boundaries that I have set to make sure that my health remains my business:

• If a medical update needs to be shared, whether on Facebook, my health blog, or elsewhere, I am the one to post it. Not my parents, not friends, not family members unless they are given direct permission.
• I’ve asked that my medical life remain private. This means that when people ask how I’m doing, my parents give a short answer rather than going into all the details of my struggles. Depending on the person, I may feel more comfortable with elaborating, but for the general population, a simple answer is sufficient.
• My doctors and parents may communicate with my permission, but not behind my back.
• If I share a photo of my leg with someone, it is expected that the photo remains in the possession of that person. This means that texting it to their closest friends or posting it on Facebook is not okay.
• I go to most of my appointments alone. If someone is there to drive me, they sit in the waiting room while I am in with the doc.
• Treatments are my decision. If I’m not comfortable with a certain medication/procedure, I need to have the freedom to say no.

Now, I know that there are some people who have absolutely no problem sharing their medical information with the world. They appreciate the love and support of other people knowing exactly what’s going on, every single second of the day. And that’s great! I actually wish I could be more like that sometimes, instead of becoming so upset when people talk about me. But after having many privacy battles and oversharing of information through the years, I finally had to set some boundaries. Some health matters are sensitive and don’t need to be the world’s business.

Does anyone else have this problem? Maybe it’s just me? Feel free to give your opinion on the matter down below.

We Are All Different

Today it was brought to my attention that a fellow RSD-er was complaining to a friend of mine about the fact that I’m not open enough about my struggles. She doesn’t understand why I don’t like to talk about my RSD to her, when she talks about her pain daily, and she doesn’t know why the treatments that worked for her didn’t work for me. Let me answer that all for you…we are not the same. Yes, we may have the same diagnosis…but that’s the end of our sameness. Same diagnosis, different lives.

Part of the beauty of life is that we are all different. If we all looked the same, acted the same, and lived the exact same lives, we’d be more like robots than humans. Frankly, life would be a boring, pointless mess. Instead, we all have unique personalities and go through various experiences that affect us in different ways.

Aside from the general uniqueness of humans as a whole, we RSD-ers each have our own journeys to travel and battles to fight. RSD isn’t a cut-and-dried diagnosis. Even from the initial presentation, our pain can show up in a variety of ways. For example, my RSD is very visible with swelling, discoloration, contractures, and (now) ulcers. However, I have friends who never present with swelling or any other major symptoms besides the excruciating pain. Some people have hypersensitivity; others can tolerate touch.

Once you get into the topic of treatments, it’s a trial-and-error sort of a deal. There is no cure for RSD, and there is no single treatment that works for everyone. The fellow RSD-er that I mentioned underwent a procedure that changed her life. For years, she and others bugged me about trying it. When I finally ran out of options and went into the OR last year, they expected it to work just as well for me. To my great disappointment, the procedure was not a success for me. Some people are able to manage their symptoms with medication; others use acupuncture and alternative options. It’s amazing how wide the spectrum of RSD diagnoses and treatments really is.

Some people want everyone to know everything about their lives; others don’t. Personally, I am naturally reserved and quiet. I only choose to share the really deep struggles with specific people who have gained my trust…well, and sometimes on this blog. I don’t talk to everyone in my life about my RSD because not everyone understands. For some, they understand but they give bad advice or pressure me into doing things I’d rather not do. Others have RSD and think that we are the same person because of it, and they aren’t able to understand when I don’t want to talk or when a treatment fails. If I talked about every struggle, every ache and pain, and every worry in my life…well, my words would never end. I don’t want to be “that person” who wallows in her disorder rather than exploring and enjoying the beauty of life. I find it easier to simply write out my thoughts or talk about my struggles with the few people who I know I can trust…the ones who care and who listen without judgment.

Now, I’m not saying that we RSD-ers can’t relate to each other at all. In fact, I think it’s beautiful that we have a common thread with what we’re dealing with. All I’m trying to say is that we all face different monsters and we are not exactly the same. We can relate, we can understand to a certain degree, but we cannot know exactly what another person has been through or feel the precise pain that they are in. We all deal with our problems in different ways, and we need to respect that without judgment.