8 Things I Want My Friends to Know About My Life With Arthritis
I read this quote on Facebook and it really struck a chord with me: “I never realized how much I took for granted until every little task became painful to do because of chronic pain.” – Author Unknown
There were also photos of showering, housework and sleeping. Of course I have thought these things, but to see it in print makes quite an impact. This quote is my life. Today, I was unable to open a drink because I typed up too many reports at work today. I didn’t do too much yesterday because I knew I needed to do laundry today. Carrying multiple loads of laundry up and down two flights of stairs is not easy for me. Meeting up with friends requires resting before and after the get-together. I barely make plans on the weekend because work is so draining. I hate it, but after so many years, I’m used to it. I’m also used to feeling “lazy,” although I know it’s not laziness, it’s just my life in chronic pain.
This past month or so has been rough. A major flare has limited my physical and emotional abilities. How did I cope? I bought a ton of clothes. If I feel horrible on the inside, I’ll make damn sure my outside looks pretty. Ridiculous, I know…but coping with this illness is so difficult at times. I needed some pretty clothes to feel better – or at least I thought I did. (My bank account would disagree.) It wasn’t until a person I know came over to me and said, “How are you?” (She also has rheumatoid arthritis.) It took me a second to realize it wasn’t a casual greeting.
Most of the time I say, “I’m hanging in there” or “I’m OK.” All I could muster on that day was “I’m not good” and “It’s been hard lately.” Saying it out loud to someone who “gets it” is such a relief. She didn’t offer me suggestions, didn’t offer to take care of stuff for me. She just listened.
Don’t get me wrong. Many people ask how I am or offer help because I am really open about my disease. I appreciate it so much, but they don’t get it and honestly, I’m happy for them that they don’t. I wouldn’t wish this chronic life on anyone. I value my friendships and go through times when I feel like a horrible friend because I just don’t have the energy to be a person some days. I keep seeing lists on social media describing how to treat people living with chronic illness. There are some great lists out there, but I decided to make my own. Here it goes:
1. I’m a person with a disability. What does that mean? Basically it means things are difficult for me if it requires walking or using my hands. Daily chores listed in the meme above are not simple. Trips to the supermarket for forgotten items don’t happen in my house. My basement looks like an Amazon warehouse because I order almost everything I use in my house online and my hands hurt too much to break down the boxes. I need people in my life who respect that I have some physical limitations.
2. If I ask for help, I am desperate. I’m notorious for not asking for help. I admit it, I’m stubborn that way – but on rare occasions I am desperate. When I am truly in need of help I will ask.
3. I’m no longer able to be spur of the moment. If you want me to meet up with you, you have to give me more than a few minutes notice. I know things pop up, and I am OK with being unable to make it. If I am going out at night, I need to rest during the day. Give me enough notice, and I won’t go to the store on my way home from work or take the dog on a long walk. If I do that stuff, there is no way I can go out in the evening. Don’t stop calling for those last minute get-togethers, just be aware I will probably say no.
4. Don’t be offended if I am not interested in cures or remedies. I’ve literally tried them all. When I say I tried a gluten-free diet and didn’t see a significant improvement, I’m told, “You probably didn’t do it long enough.” I’ve done every shake, cleanse, supplement, diet and therapy known to mankind, but none of it made enough of an impact (well, I do swear by essential oils) for me to continue on with it. Being chronically sick is exhausting. Treatments, diets, shakes, etc. are expensive. Diets especially require me to cook. I can barely cut my food when someone else makes it for me. Slicing and dicing food to cook ain’t gonna happen if I want to use my hands the following day.
5. Expect me to limp, wear compression gloves, braces and use a cane from time to time. My body is attacking the lining of my joints. I have multiple joints that are swollen and hot daily. I admit there are days when I am limping and don’t even realize it. To me, it’s normal. I’m sorry if it makes you feel uncomfortable that I am limping. If I could stop, I would. Pointing it out to me over and over does not help me in any way.
6. If you ask me to meet you in the morning, don’t expect me to be on time. It takes me up to one and a half hours to stand up after sleeping all night. My body just can’t move in the morning. My back literally locks up. It gets better as the day goes on, but early mornings are really difficult for me. It’s actually a real symptom of my disease. I hate it.
7. Please don’t pity me. This is my life. Not one I would have chosen, but I think I am making it a good one. Living with RA stinks, but it isn’t the end of the world – it’s just another way of living in the world. Empathize with me, but don’t feel sorry for me.
8. Don’t forget about me. Life gets busy. A simple text or call letting me know you care how I am doing means a lot. Fill me in on your life. Just because my life is limited at times doesn’t mean I don’t like hearing about your life.
I wrote this from a personal perspective, but I am pretty certain that many people living with chronic illness can relate. Now I’m off to finish taking laundry upstairs. I have to rest after each trip I make to and from the basement. I’m still not desperate enough to ask for help…but I’m getting there.
This post originally appeared on As My Joints Turn: My Autoimmune Soap Opera
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Thinkstock photo via CentralITAlliance.