coping with chronic illness : our story

My husband has a chronic illness (an autoimmune disorder that is widely misunderstood by the medical profession) and we do not lead a normal life because of it. This post is my way of purging our story in hopes that people might grasp what we've tried so hard to hide; it is meant as a way for us to expound everything that we're facing, once and for all. Though this post is profoundly personal, it is also meant to hopefully empower anyone and everyone who has or cares for someone with a chronic disease as well as those who are attempting to understand a loved one who does.

coping with chronic illness : our storyUntil you or someone you love deals with a daily illness or disease, it's truly hard to imagine what it's like to not have control of your health or to watch someone slowly decline. For the past 5 years, my husband has been on a roller-coaster ride dealing with "chronic-fatigue," adrenal failure and thyroid disease (Hashimoto's). Many people can manage thyroid issues or fatigue with supplements, medication, diet, surgery or lifestyle change, but unfortunately, the answers are not always so simple. However you choose to label Dave's current condition, it basically means that his endocrine system has broken down and his body is not producing what it needs to create energy or manage stress. ("Stress," in this context, ranges anywhere from hunger to physical exertion.) Lack of imperative hormones effect every single function of the body and result in excessive and abnormal fatigue, the likes of which a healthy person could not ever fathom. Any normal activities such as sitting upright, standing, breathing deeply, taking a shower, eating...etc. require more cortisol than a poorly functioning Hypothalamus- Pituitary-Adrenal Axis (HPA) can provide and become nearly impossible.

From the outside looking in, it would be easy to label someone like Dave as lazy or a hypochondriac. Has he not seen a specialist? Why aren't the doctors helping him? We've received all sorts of questions and comments ranging from, "He just needs to push himself a little harder to do things," to "When do you think he'll bounce back?" We do not claim to know exactly what's happening inside Dave's entire body, but we do know that it's very complex. We've seen the dangerous consequences from "forcing" things and we've tried almost every avenue we've been guided to or researched. 

Over the years, Dave has read, studied and learned the ins and outs of the endocrine system, ironically, as if his life depended on it. He's been mocked by medical doctors as a "know-it-all," referred to other more knowledgeable specialists and simply labeled as "chronic fatigue" and sent on his way with no answers. We've seen every "ologist" there is and have spent thousands of dollars seeking respite. He's tried various strong medications, steroids, hormone replacement therapy, sleep apnea CPAP machine, supplements, lifestyle changes, circadian dosing, acupuncture, meditation and a complete vegan/gluten-free daily-juicing dietary overhaul. (Please read this post if you assume we're malnourished.) Just as I would imagine parents receive well-intentioned yet unwarranted advice from childless friends and family, both of us have been scrutinized and criticized for our decisions and desperation. We are doing the best we can, armed with years of personal experiences, investigation, trial and error. And yes, we are desperate. 

We've been together for 10 years and only married for 3, but we've already been through more than many people twice our age. We've both set aside so many plans and aspirations that we can't really remember what it's like to be a "normal" young, married couple. I've attended countless events, parties and activities solo, trying to buffer the impact of Dave's recurrent absence. Dave has struggled to come to terms with not being able to do countless things he'd like to do from his beloved Seidokan martial art to simply walking down to the mailbox. I've grappled with keeping the inside and outside of myself and our house in working order all while trying to tactfully answer the dreaded question, "How's Dave?" The answer is: bad or worse.

Forgive my frank description and keep in mind that this post is not meant to be a pity party. It's impossible to lightheartedly explain our situation, which is why we do our best to keep it to ourselves. I've only recently accepted the fact that keeping such huge struggles private is just denial in disguise and it's limiting our capacity for growth. I'm ready for people to understand what it's like, from both sides of an illness and hopefully find some understanding and support here or elsewhere.

For the caretaker:
Sometimes, people ask me how I'm coping. Thankfully, by nature, I'm very optimistic and happy. I do not ignore our struggles, but I have a lot of different hobbies and outlets for my frustration like yoga, running, gardening, playing drums, DIY projects..etc. I also have great friends and a lovely family, but here are some specific things I do to cope:
1.) Meditate/pray: There is no right or wrong way to try this. However you experience meditation or prayer, it can be an invaluable resource for your sanity.
2.) Get creative: Since Dave and I can't take walks or do anything active, it's easy to fall into a rut, get bored and cranky. I try to keep a list of inactive things we can do together for fun, like baking or playing board games.
3.) Vent: This comes more naturally to some people, but for those of us who struggle to talk about depressing things, email a friend, use a diary (or blog!). It's very helpful to let your emotions flow freely every once in a while, even if it's just between you and yourself.
4.) Delegate: This is very difficult and uncomfortable and it's only a recent revelation for me. No one likes to ask for or receive help, especially when you'd like to appear okay, but when help is sincerely offered, just take it and don't look back. Pride is the only reason to try to handle everything alone.
"You can do anything, but not everything." -David Allen

For the chronically ill:
It is exceptionally taxing to have an autoimmune disorder or a condition that is not obvious from the outside, not fully diagnosed or not the same everyday. In addition to the unbearable pain, fatigue and emotional exhaustion, you often have to deal with putting on a front to hold down a job, answering prying questions or dodging frustrating situations. Not everyone has a huge support system, so the following list of coping suggestions does not include additional options for accepting help from family and friends.

1.) Relax: Make a point to set aside time each day that is NOT directly dedicated to your health maintenance. Whether it's meditation, recreational reading or nature/outdoor time, don't neglect the power of relaxation for your health.
2.) Vent: Just like for a caretaker, it's important to allow time to honestly express your emotions. Whether it's written or spoken, let it out sometimes.
3.) Fuel your body: Cooking or meal planning can be overwhelming, especially when you don't feel well, but right now as you read this, your diet is either helping or hindering you. Think about what you're putting into your body and make an effort to eat intentionally.
4.) Do your research: For some people, this can become an obsession. Without allowing it to monopolize excessive amounts of time, choose to be an active, informed participant in your health. There is so much to know about the body and how it is impacted by lifestyle and nutrition. Exploring theories, new research and options is not something to fear.
"The oldest and strongest kind of fear is fear of the unknown." - H.P. Lovecraft

As a yoga instructor, I've seen stress creep up and wreak havoc on people's bodies and minds before they even know it. It's not easy to have unanswered questions about your health or watch someone suffer, but learning how to weather the storm is vital to your morale and overall well-being. Regardless of your connection to this issue, however distant, it's important to realize that not everyone's struggles are visible or have the same answers as your experience. Be kind to those around you, beware of judging their struggles and have compassion for what you may not understand. 

I never intended to publish this cathartic post, but I finally decided it's time to use the information and experience we have to inform those who are watching or encourage those who are fighting the same battle. My current ambition is to start a dialogue with these thoughts. Whether you personally know Dave and I or just stumbled across this post, I am actively looking to start some sort of support group. It doesn't matter if you're healthy, unhealthy or just curious, I would love to reach out and encourage other caretakers in my position or people suffering from chronic illness. I'm hoping that someone might run across this post and find solace or insight. If so, please contact me.


For more information or help for spousal caregivers, click here.