Have you missed the previous posts for the #SelfCareMvmt? Take a look at weeks 1 – 5 below:
I have talked a lot about this in the past. When you have chronic illnesses, the difference between visible and invisible illnesses becomes a large part of your interactions with the world around you. It’s a conundrum because you want people to understand what you’re going through, yet you also don’t want it to be the first thing people notice about you.
In comes this very last blog post for the #SelfCareMvmt series, where I’m asked to write an open letter to someone in the hopes that it helps them understand some of the “unseen” challenges I have as a patient. For me, I think there are a lot of people surrounding us chronic illness patients that don’t really understand or can’t quite comprehend what we actually go through on a day to day basis. I think what I’d like to do in taking this opportunity to write an open letter is to be real honest about limitations, symptoms, and day to day occurrences for chronic illness. In doing so, this letter really becomes an open letter to the world around me.
When I talk about my chronic diseases and health problems right now, it’s a little tough to decipher because I’m in the middle of so many questions, unknowns, and tests related to me getting a second opinion. Right now, I have an immense amount of symptoms and struggles, but not very many answered questions or official diagnoses. Keep that in mind when I talk about how severe my limitations and symptoms are. I don’t envision this to be the case forever, knowing that I will get a better, more thorough, diagnosis and better treatment soon. And chronic diseases also ebb and flow, meaning the symptoms I have today are not necessarily the symptoms I will have next month, next year, or 20 years from now. The beauty of rheumatology, right?
So what is it like to be me every day? It’s a lot like a 28-year old’s mind stuck in an ailing 85-year old body. Let’s get pretty real around here–I am probably one of the most stoic people you will ever meet. In fact, of the handful of therapists I’ve had in the past 6-8 years, every single one of them has uttered those words: “You are an extremely stoic person; that brave face you put on does wonders to fool everyone around you.” Take that as you will, but to me it’s both a positive and a negative. I am stoic. I do put an extremely brave face on for probably 95% of the time. In some ways, that brave face lets me have a successful career, interact with my friends, and simply get out of bed every morning. That brave face keeps me externally sane. The fact that I remain stoic fools people into thinking I feel pretty good and that my health isn’t bothering me that much.
Here’s the truth behind that: fighting to keep a brave, stoic face is what keeps my head above water. My symptoms are like nothing you can imagine. So at night, and on the weekends, I’m often too damn exhausted to keep that face on. I often end up in bed all weekend and/or sleeping a ton. It’s not so much that I don’t want people to know how bad my health problems really are: I obviously have no hesitations on sharing personal details of my life. I think it’s more for myself than the world around me. I want to prove to myself that I can be successful and that I can win in the face of serious physical (and sometimes mental) adversity. In order to do that, I have to succumb to the symptoms when I have my down time. It’s exhausting.
In keeping with the phrase “an open letter,” here are what my symptoms really feel like. No faking, no toughing it out, no masks. I’ll be talking about my symptoms outside of official disease names since so much of that is back to the drawing board for me. In terms of back pain, I typically have this every day. If it’s my lower, lumbar spine pain, then it feels like someone took a block of knives and just stuck them all in my lower back. In terms of the thoracic, mid-spine pain, that’s usually compared to wearing a belt or something far too tight right around my chest. When I try to breathe deeper, it feels like the inside of that belt has sharp points that dig into my ribs. Moving on to my hips–surprisingly this is what actually made me head to the doctor for the first time 5 years ago. The hip pain feels like flu body aches the majority of the time; sometimes it ends up as sharp pain, but it’s mostly throbbing, and it makes it difficult to walk normally a lot of the time. In fact, lately I’ve been contemplating whether or not I need some sort of walking assistance for when the pain is that bad (like a cane). I still don’t know how I feel about that–but it’s something I will probably bring up to my doctor on if there is any benefit to it or not. I’ve been having trouble walking without my legs (hips, knees, and/or ankles) giving out or being in extreme pain lately. So no, I’m not lazy–I just try to protect myself from exacerbating my symptoms as much as I can. When I say that I can’t, it’s not an exaggeration or an expression, it’s that I really can’t at that moment. Some people in my life are more accepting of that fact than others, but I have learned to stay true to what my body needs regardless.
Now that we’ve covered the core areas of the body, I can talk more about the peripheral joints, like hands, wrists, knees, ankles, feet, maybe shoulders. These joints are, again, less of the stabbing pain, and more like the throbbing body aches. Often along with that I get the burning nerve pain where it feels like my joints are on fire, but that they are also cold–think Icy Hot, and not in a good way. I guess that goes into the widespread body pain that I have. The nerve pain I mentioned occurs all over my body in varying degrees of severity. On really bad days, it actually hurts to wear clothing–in fact, my hair actually hurts, and yes, that’s a real thing. Look it up. I tend to have sensitivity to touch, relating to this. For example, when I reach to itch the back of my arm, it actually feels like I bruised it afterwards.
The temperature fluctuation is another fun one! In the recent years, I have developed a part of my immune system that is unable to regulate my body temperature. In other words, there is actually a temperature control bit of my system that is missing. This means that as much as I love summer, I really can’t handle it anymore. So when you can’t believe why I’m not outside enjoying the 80 degree weather, it’s because in 10 minutes I’d feel like the world is closing in around me and I’m going to pass out. Yay!
Lastly, let’s cover the less obvious parts of the body symptoms. I’ve recently developed digestive issues. Bad stomach cramps, etc. We haven’t yet explored that one, but it could be due to the inflammation in my body. Lots of preliminary studies show a link between gut issues and inflammatory diseases and/or autoimmune diseases. Additionally, my energy levels and fatigue are horrible. The lack of energy and severe fatigue are really hard. It can be physically painful for me to not allow my body what it wants: sleep or rest/laying down. I am often to the point where I am so exhausted that I’m in tears. And keep in mind, that’s after the fact that I typically get 8-10 hours of sleep a night. All of these symptoms definitely do not help my depression and anxiety either, but it’s a cycle. They both cause the other one, so to speak.
In saying all of this, once again, I’m not looking for sympathy, I’m not looking to get attention. As I explained above, I obviously remain stoic and the exact opposite of how I feel in order to avoid a lot of that. Nevertheless, I think it’s important, especially if I’m trying to write an open letter to the world around me, to be completely honest and real with all of you. It’s really not fun to live in my body every day. But I also know that I have to make the best of it, so I tend to put that brave face, or stoic personality, on in order to trick myself into keeping my mind off the symptoms. Like I said, it’s really more for me than for you. But there is still that part of me that wants people to see me as Kristin, and not as Kristin, the girl with multiple health problems.
I urge you to ask me about all of this. If you aren’t sure what it feels like, just ask me. Don’t assume. I’m obviously an open book, and it’s one of my missions to enlighten the world to chronic pain and chronic diseases. Believe me, people like me are more common than you would think.
P.S. As we wrapped up the #SelfCareMvmt series in blog form, I urge you to attend the Self Care Summit in Toronto on June 27th! This is the first event of it’s kind, put on by Self Care Catalysts. I’ll be there speaking about patient experience and sharing my story, so I hope to see you there! If you can’t make it in person, I hope you’ll follow along on social media and interact with the conversation.