By Trudie Mitschang
There are many websites and blogs for those with chronic illness. While trolling the Internet recently, we came across an essay by Kelly Clardy titled “Am I Normal?”
Kelly writes: “If I have a big party or wedding to attend, I am resting up until the event so I am sure I will be able to go. After working a full time job, it’s all I can do just to eat dinner and get ready for bed. If I go out to dinner on a week night, I spend the rest of the week in bed by 7 p.m. just to make up for it. And don’t even ask me about housework. Getting through the daily stack of mail can be challenging enough. Sounding normal yet?”
Kelly’s wit and biting humor got our attention. Here she shares a little bit about her life with IG Living.
IGL: Tell us about your diagnosis.
Kelly: I was a healthy child and didn’t have any health issues when I was young. When I turned 25, I was suddenly sick all of the time, pneumonias and hospital visits constantly. I went through many doctors (primary care physicians, ear nose and throat doctors, allergists) until I found the right physician who knew what I had in the first five minutes and did the testing. So after 12 long and sickly years, I was finally diagnosed with primary immunodeficiency disease (PIDD) at the age of 37 and have been receiving intravenous immune globulin (IVIG) at an infusion center for three years. I have a host of other serious diagnoses, but PIDD is the big one.
IGL: What do you say when you find yourself in one of those frustrating “but you don’t look sick” conversations?
Kelly: I have those conversations pretty much daily. I have a co-worker who loves to tell me every day that I “look fabulous and not sick at all!” When I feel that someone isn’t acknowledging my illness, I have a tendency to talk about it even more. I want to drive home the fact that I am sick until I’m sure they’ve gotten it. But I can go the opposite direction too. In response to that “normal” essay, a girlfriend said, “Wow, I had no idea you were so sick!” And my first response was to say, “No! I’m not that sick, really, I’m fine!” Not true of course - it’s hard even for me to wrap my head around it sometimes.
IGL: You mention in your essay about taking time off work for treatments. How have co-workers responded?
Kelly: My days for IVIG are always on the calendars at work, but they don’t always remember. I try to remind them, but I still get requests to take my laptop to the infusion center and answer emails or to take urgent conference calls from there. When I first told my boss (a former emergency room trauma nurse) that I had to be out one day a month for IVIG, she said, “Can you just get it on your lunch hour and come right back?” Um, no.
IGL: Finish this sentence: If time, money and health were no obstacle, I would…
Kelly: I’d promote PIDD education and awareness. I feel our community desperately wants to be heard. Everyone knows what the pink ribbons stand for. I want that same awareness for zebras. I want local support groups in every state, a fundraising walk and IG Living magazine and Immune Deficiency Foundation materials automatically given to every single patient who receives IVIG. And the second more guilty pleasure would be to open a no-kill animal shelter with a focus on kitties! At least for me, kitties make chronic illness easier to handle. A favorite quote from a Scrubs episode: “Give me a box of kittens, stat!” Amen.
IGL: What advice do you have for others?
Kelly: Reach out to as many patients like yourself as possible. They are truly the only ones who “get it.” This disease is a roller-coaster ride with ups and downs, and it’s good to have others there for you when you hit the lows.