IFAA, the non-profit I cofounded in 2013 recently shared this meme on their Facebook page.
Of course I have thought these things, but to see it in print, makes quite an impact. This meme is my life. Today, I was unable to open a drink because I wrote Christmas cards last night. 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 prior 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 RA). 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 okay. 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:
- I’m a person with a disability but I am not disabled. 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 limitations physically but understand that I’m not totally helpless.
- 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 it’s a rare occasion that I am desperate. When I am truly in need of help I will ask.
- 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 okay that I can’t 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 that I will probably say no.
- Don’t be offended if I am not interested in cures or remedies. I’ve literally tried them all. When I say that I tried a gluten free diet and I 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 and you know what?? None of it made a significant 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.
- 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 I don’t even realize it. To me, it’s normal. 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.
- If you ask me to meet you in the morning, don’t expect me to be on time. It takes me up to 1.5 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.
- 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 a disability 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.
- 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 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.