I tend to find that a lot of people don’t really know what to say to me concerning my disease. I know they want to be supportive or encouraging, but often it comes out misconstrued, and sometimes condescending. I get it. It’s hard talking to the sick. I never know what to say when I come across others. You want to say “Get better soon”, but in many cases that isn’t going to happen as they have long term illnesses. You want to say “You’re looking great”, but it’s hard to get out when you’re looking at the pale and sickly version of their former selves. Even “I know you’ll get through this” can come out really thin, because you really have no idea if they will, and they don’t need a reminder of that.
I think some people definitely handle it better than others. Those that have been dealing with friends or family whom are ill will obviously have a better grip on it. They will be less likely to break the record of shoving their foot far into their mouths. At the end of the day, however, I’d much more prefer an honest comment than a forced lie. If I’m having a bad pain day, and I know I don’t look well, press do not attempt to cheer me up with a “Wow, you’re looking great”. Or even worse, a “You don’t even look sick”. While I’m sure your heart is in the right place, comments like these can be really difficult to hear when we are already feeling terrible, and know we look it too.
You know that old saying “If you can’t say something nice, don’t say anything at all”? Well, in the case of being chronically ill, that phrase is reversed. Please don’t force a good word. I would prefer silence rather than an uncomfortable compliment that I don’t feel fits me or the situation. And I sympathize with you, really I do. It must be incredibly awkward and difficult to make small talk with me when I’m feeling like crap. When you have to watch me cross a room at the pace of a snail, and lowering myself into a chair so slowly that you can hear each individual joint click. Yikes. That must be a nightmare.
I feel the worst for my mom. Parents should never have to watch their kids go through extreme pain, illness. When you retire, I imagine your ideas of the next few years are filled with trips to see exciting places, hobbies and crafts, in Hawaii there’s definitely trips to the beach, and other fun sun filled activities with very little stress and hardships. Those long hard days are behind you once you retire. Right?
This morning I read a great article on Rheumatoid Arthritis.net written through the perspective of a husband whose wife has had Rheumatoid Disease since she was two. He wrote how difficult it is for him to watch friends, family, and society treat his wife like she is broken, and even worse, that her disease is an inconvenience. My sympathies go out to that man, having to deal with the hardships that his wife’s disease brings daily. But he seemed to be handling it extraordinarily well. Patience. That’s key.
My mom has a lot of that. After a full life of working grueling 9 to 5’s, two huge international moves, raising a daughter basically on her own with very little financial help, attempts to date and have relationships, while also maintaining her own individuality, she has always been one of my role models. If I can have a life half as full as hers I’d consider it a life well lived.
But then I got sick. My life derailed, and so did hers.
Her friends, family, and relationships can hide their heads in the sand as long as they please, but at the end of the day… my mom knows we are in this together. And unlike other people in my life I know that I can count on her to help me get through this. We have had some really tough times. My disease is scary. I won’t lie, there have been several occasions where she has had to watch me sob helplessly when I haven’t been able to keep it together. She has stood by me when my medications take over my body and mind, and mean and grumpy things come out of my mouth. She understands when I say I’m in pain. All I have to do is say “Mom,I’m in pain”, and instantly she understands what I need, or don’t need. She can look at me and know exactly how exhausted I am, or if I need to eat something, or if I need a hug.
My sympathies go out to her, because just like that husband, my mom goes through my disease with me. It’s not the retired life she wanted. And sure, she could walk away at any moment and decide I’m on my own, just as others in my life have. But she hasn’t, and she won’t. Because we are in this together.
Every chemotherapy treatment where I’m lying in that cold hospital bed with an IV in my arm, she’s there. In the waiting room while I give blood for the six thousandth time, she’s there. Sitting bedside while I wake from surgeries, she’s there. Handing me a glass of water while I take handfuls of pills when I visit her, she’s there. Holding my hand in the doctors office as I receive more and more bad news, she’s there. And she doesn’t put a limit on her help. She goes to every appointment and treatment with no exceptions. She doesn’t care if anyone else is there, because she’s there for me. No restraints hold back her love for me. She stands up for me no matter what. That’s real family.
And my sympathies go out to her. Because she does whatever it takes to be with me, to help me. Because we are in this together.
If you would like to help support me, and help me gain my financial independence back, please make a donation:
Christine Lilley’s Life Fund