11 confessions of someone living with a chronic illness.
I feel like I've lost myself along the way of this 13 year journey with Arthritis. My diagnosis has changed, my pain has changed and so has my support system. I'm definitely not the person I was when I was diagnosed. What I have learned though in these past 13 years, is what not to say to me. Even if you have the exact same condition I have, it doesn't mean that what works for you will work for me. There is no cure, that's why it's called chronic. It never fully goes away. I've compiled a list of thing you should know about someone with a chronic illness. This list is pretty specific to me, but I'm sure a lot of it applies to others.
1. I Always feel like I'm letting someone down. Whether I'm canceling plans, taking a day off of work, showing up late, sleeping in, cutting plans short, when I am quiet when I'm in a social situation, I always feel like I'm letting someone down. This illness makes me not myself, I mean yes this is who I am now, but its not the person I remember being. But just know, if we make plans, it means that I've spend two or three days preparing for our plans, resting and that it will take me a day or two to recover from them. If I have to cut them short or change them please understand it is a last resort and I wouldn't do it unless I absolutely have to, but the last thing I want to do is feel like I'm constantly letting people down.
2. I feel like I am alone. As much as I have a great support system I am alone in this. I make every medical, personal and social decision I make on my own. I spend much of my time alone and no one knows what I'm going through but me, not even anyone with my same disease really knows what I go through. Chronic illnesses are extremely lonesome, I have a better relationship with my bed than I do with most people.
3. I often have anxiety and depression. Now if you know me, you wouldn't guess this, but not only me but most people with chronic illnesses get social anxiety and depression. We feel like we're "behind" in life compared to our peers which adds pressure and depression. Watching our friends and peers start families and meet big mile stones before us is hard to watch, and it can cause social anxiety which leads to depression. In the age of social media its really hard to sit in your bed on social media and not compare your life to someone else, as much as you try not to.
4. I am always in pain. Yup, ever single day. I may talk about it a lot at times and others not so much, but that doesn't mean I'm not in pain, because I always am. I hate talking about my pain, some days I'll lie and say I'm fine, other days I can't hide it. Some days I'll do a great job of hiding it, but it doesn't mean that I'm not in pain, I have a pretty high pain tolerance at this point.
5. Every healthy day is a gift. Spoonies don't fully know what a healthy day feels like until they've had a flare. We often take a healthy day for granted because, we are always in pain. You never know when your medication will take a turn for the worse, cause a complication or allergic reaction and you wind up in the ER.
6. I don't look sick. I try to look better than I feel most days. Others I can't help but look sick, it's hard to cover up what pain feels like. I go to work, (or work from home) I do my best to contribute to society, make plans with friends, take my dog for a walk... that's why it's called an invisible illness, I may not look sick but I am sick. My body is constantly waging war on itself, I'm sure as hell gonna hide it if I can.
7. It seems impossible to get out of bed. This is me most mornings. The fatigue is one of the hardest parts of having an invisible illness. And no it doesn't help to get up and do things, it's actually quite dangerous when I'm as tired as I am. Most mornings I wake up feeling like I haven't slept in 72 hours, and that's after a full night sleep. There is nothing I can do but continue to sleep. My body is fighting something, so I need listen, and give it more rest.
8. I am afraid to work, make plans, or have a life. I used to work a corporate job, and now I work for my family business, and don't get me wrong, I LOVE contributing to my family business. But what I'm doing is a completely different career path than what I went to school for. I did realize what I went to school for was not what I wanted, but I had found a path in patient advocacy that I felt at home. Encouraging other patients to share their journey with this condition or disease. But working 40 hours+ in an office, I'm scared to go back. I don't think I could do it. It terrifies me. The mornings I wake up exhausted is more than typical allotted sick time. My family business allows for me to work in the middle of the night or make up my time if needed, to work from home and adjust my work schedule to my condition. The same goes for making plans with friends. I'm scared to travel for too long, I wonder, how am I going to get my medication, how am I going to travel with my injections, am I going to be too tired and spend most of the trip in bed? There are a million questions and doubts I have to live my life. This disease holds me back from living the life I want. I watch my friends out living their lives, care-free and I'm incredibly jealous. I know I shouldn't be, but it's just human nature.
9. Exercise doesn't always help. I get this one a lot. And yes, sometimes it can help, but not all the time. I was an athlete growing up and way more competitive than my dad tells me he thought I would be. When I would go to the gym I wanted to be faster than the person next to me, I probably should have done more group workout classes for that reason. But I'd try to beat my time or calories, anything I could do to get ahead. But now, that competitive nature bites me in the butt. I can't seem to figure out that I need to just move, not necessarily leave the gym dripping in sweat to get a good workout. I often times get the energy to go, then over do it and cause a flare. This is an ever going circle. Usually when I'm having a flare it feels like my joints are broken... working out on inflammation... not really all that enjoyable or good.
10. Not all doctors understand. Finding a doctor who understands, who wants to help is like finding a unicorn. Most doctors these days are either set in their ways, they think you're drug seeking and don't want to help you. This is the most frustrating thing I've ever experienced. I recently moved and have been dreading finding new doctors because just last year at this time I was searching for a doctor to help me. I had been told by my rheumatologist they wouldn't help and by my primary care (at first she couldn't do anything) so I had to go to a pain clinic. They lectured me for an hour and then turned me away telling me my pain isn't real. I've never been so infuriated in my life. Finding good doctors is extremely hard and you when you find a good one, you hold on to them.
11. Thank you, but I don't want your advice. This is probably my biggest pet peeve. People offering up unsolicited advice about my disease and my journey in this disease. Yes, at times I may ask for help or suggestions, but if you come at me telling me I should: Stop taking certain or all meds, start yoga, try a certain diet (really sick of this one), be vegan or vegetarian, exercise more, stop sleeping so much, taking certain vitamins, etc... I mean this list could go on for ever (it kind of reminds me of all the ways to cook shrimp from Forest Gump...but I digress). There will be times though that I ask for suggestions on doctors or treatments, typically I'm asking other Spoonies who are in my shoes. If you feel like giving me advice, at least make sure you're coming from a place of empathy and not sympathy or lecture. Chronic Illness typically means there is no cure... so if there was a cure it would mean something would work for everyone, and so far, at least with my disease there is no cure, and what works better for me may not work for someone else. So your diet, yeah it may or may not work for me... but let me figure that out.