Posts Tagged chronic illness
I was diagnosed with Rheumatoid Arthritis or Rheumatoid Autoimmune Disease when I was 29. It’s an awkward age to be told you have a chronic disease.
There was so much I hadn’t yet accomplished. At the time, I was single, struggling to get my business off the ground, training for a marathon, and pushing thoughts of kids and marriage into the future. And then, a diagnosis of RA threw all that up in the air.
I feel like the pieces are still settling, four years later.
I got back together with a long-term boyfriend, largely because of my diagnosis. When I needed him, he was there without question. All the issues we’d had in the past paled to how much we obviously cared for each other, and that remains true today.
I pushed through a lot of ups and down and pain to cross the finish line of my first marathon. Today, I still run. Though training for a second marathon has faltered twice due to pain, I still have it in the back of my mind as a goal.
I tried to manage my business, while attempting to lower stress (doctors orders, and so much easier said than done in the world of start-ups!). The business is now doing better than ever, but stress management remains a constant struggle.
And then there’s kids…
I always figured I’d be a mother someday. I was never in a rush about it, but down the line, raising a family was always something I imagined for myself. After my diagnosis of RA, I suddenly found myself in a new reality.
When you have a name for the pain you’ve been experiencing, it becomes unavoidably real. There was no more blaming running or snowboard injuries. I couldn’t blindly keep pushing myself. I had pain walking and writing, bone erosions that no amount of medication could erase, extreme fatigue that was even causing me to fall asleep at work, a whacked-out GI tract that led to weight loss and avoiding eating all together, and depression because I had no idea why any of the above were happening to me. With a diagnosis came the answer of why, but it also brought the necessity to slow everything down and focus on getting better.
The new reality also meant being placed on strong drugs to control my symptoms, including a chemotherapy drug that is used to induce abortions in ectopic pregnancies. This particular drug requires women to be off of it for an extended period of time before even attempting to get pregnant.
Suddenly, I was far less sure I would ever be a parent. Four years of focusing on my health, coming to terms with living with chronic disease, and finding a new normal has given me the space to seriously revisit the question of parenthood.
Huge questions still exist for me. These are questions that only those of us living with chronic illness and our partners can understand.
Will I be healthy enough to go through pregnancy? If I ween off my RA drugs, will I return to the level of pain I was at pre-diagnosis? Will I be able to stay off the drugs long enough to breastfeed? If I can successfully have one child, will I be able to have another? Will pregnancy make my symptoms worse or better? Will post-pregnancy change my disease trajectory? Will the drugs I’m on be as effective post pregnancy? Will my RA slow me down as a parent? Will I pass the genetic disposition for autoimmune diseases on to my kids?
To help me navigate the complexities of this big decision, I’m reading Arthritis, Pregnancy and the Path to Parenthood by Suzie Edward May.
I’ve only just started the book, but I already identify with Suzie so well. She was diagnosed at 27 before having kids. The book offers a lot of hope, but also non-sugar-coated truth. I’ll give a more complete review when I finish it.
In the meantime, can anyone weigh in on what factors you looked at when deciding to become a parent while living with a chronic disease?
First off, my apologies for being off the radar for, well, months.
My work has been busy and I’ve been trying to finish up my second novel. (If anyone has any interest in checking out my first book, you can find it here.)
It’s left me with little motivation to write this blog after busy days that include a lot of time in front of the computer. In fact, I’ve spent many nights these past few months just being exhausted and having a great relationship with Netflix.
On to the good stuff.
I was recently at a dinner and found out through that a person close to me might have Lyme Disease. I was listening to her symptoms – sore joints, fatigue, depression – and told her I understand how a lot of these symptoms feel and that she should call me if I want to talk.
To which she responded, “But you’re better, right?”
She’s not the first person I’ve heard this from. I’ve heard it from friends and family, those who should really understand chronic disease better. And I get it. They see me and I look healthy — I go to work, get exercise, write, travel. I don’t complain like I used to before I had a diagnosis.
I’m better, right?
Well, not exactly. “Better” suggests “cured” and I think that’s how most people mean it. But in the world of chronic disease and Rheumatoid Arthritis, cured is not really part of our reality (Yet! So much exciting medical research is happening right now!).
So how can you balance educating people, but not causing those close to you worry -OR- come off as complaining?
Honestly, I’m not sure.
I responded by saying that my drug therapy allows me to manage my disease and I feel much, much better than I did before treatment. This is the truth. I balance pain, fatigue, new limits, and, yes, even depression from time to time. I tweak my drug regimen constantly to take the least amount of drugs possible while managing my pain. I take two heavy-duty drugs weekly just to keep a semi-normal life and I get blood panels regularly to make sure my liver’s keeping up.
I don’t feel cured, but I do feel better.
So, what about you? How do you handle the “Aren’t you better yet?” line?
Putting your life in someone else’s hands is one of the hardest things patients are asked to do. We have no choice but to place our faith in the abilities and opinions of other people.
Sure, we can mitigate risk and make ourselves feel better by doing loads of fear-inducing Google research or seeking a second opinion. But, in the end, you choose your doctor and you move forward.
I recently read an op-ed in the NY Times about the way we make decisions in the medical sphere. It brought up some interesting points. First, we tend to trust authority figures, including doctors, without question. This is especially true when we’re frightened and vulnerable. And who isn’t when dealing with a scary, life-altering diagnosis? This can be dangerous since as many as one in five diagnoses are wrong (according to the article, which didn’t quote the source).
What’s more, we tend toward optimism, filtering in only the information we want to hear. I believe this can be a highly beneficial strategy of coping. After all, optimism, even in the face of a dismal diagnosis, can keep you feeling strong and keep the depression that effects up to one-third of patients with chronic disease at bay. But there’s a risk to the optimism bias, which is that you may be ignoring potential lifestyle risks or bad news, leading to decisions that may hurt you in the long run.
So how do you keep a clear head and move forward confident in the abilities of your chosen doctor? Well, for one, you don’t put your blinders on simply because you made a choice. The treatment you’re on now may not be the one that will be best for you a year from now. New treatments come out and sometimes our bodies begin to reject past treatments. Only you, not your doctor, can be responsible for noticing the changes in your symptoms. You can listen to your gut about what’s working and you can follow research and bring new treatment ideas to the table.
There’s more you can do to remain confident in your treatment. You can always seek second opinions for big treatment changes. You can bring in another set of ears to appointments so that when your emotions are running high and you’re hearing not-so-great news, you have another person to interpret what the doctor said later.
When you’re doing all that, you have nothing left but your best option, your best guess, and faith in your doctor’s treatment. And a healthy dose of optimism, of course.
My boyfriend likes to tell me he’s proud of the way I’ve handled my illness. He says he’s proud of how I’m able to give myself shots, go in for regular blood tests and doctor’s appointments, and just handle all my medical stuff.
There is something so powerful in those words: I’m so proud of you. When you’re a kid, you hopefully get to hear your parents tell you their proud. But as an adult, how often do you really get to hear those words? Not nearly enough.
And man, it feels good to hear him say, “I’m proud of you.” Sure, there’s this voice of protest that wants to tell him that it’s strange to be proud of someone for doing what they have to do. For me, it doesn’t seem like I have a choice in the matter. I’ve been dealt a less than ideal hand. Who hasn’t in one way or another? I deal. Should I really be proud of myself for that?
So to all of you guys dealing with a chronic illness or a family member with a chronic illness, I want to tell you I’m proud of you. The path you’re on isn’t easy. It may seem that you’re just doing what you have to do to survive, but you’re juggling more than people ought to. You’re handling a really ungraceful illness with grace, and I’m proud of you.