This column is dedicated to my wonderful husband Dean who has stayed with me through thick and thin. I am blessed to have you!
I’ve had an interesting week. I could say it’s been an interesting five years, but let’s stick with just the week to start off with. If you are a regular reader, you are aware that I have an unusual set of illness, symptoms and am in the process of winnowing and getting a diagnosis. Seems funny to still be doing that when I’ve been ill for so long. For those of you just tuning in, I’ll nutshell it:
Five years ago, I was a happy, mostly healthy person who had Hashimoto’s thyroiditis pretty much under control. Oh, I had the usual issues with weight and some fatigue and when I got sick it took longer to get well. But thanks to Armour natural desiccated thyroid, I was a pretty happy camper. Super active, lifted weights and loved to work out. I had the energy and attitude needed to have a great life.
Then, I made a new friend. I don’t’ know how long the tick had been lodged on my waistline, but there he was. I dug him out, and as I didn’t notice anything out of the ordinary, I didn’t think much of it. Bad idea. A tip, should you find a tick on your body, take both of you to the doctor. Let THEM remove it and send it off for testing. Get them to give you a prophylactic dose of the antibiotic Doxycycline. You will thank me for this advice, trust me.
So, not too long after this, it all started. A looooong, slow, agonizing slide into serious crippling illness. At first, we thought I had simply dislocated my knee at work, I was sent to physiotherapy and assumed I’d get better. I did not. Within five months of the tick, I could barely function. Now, fortunately, I stumbled onto a doctor who diagnosed me clinically as my tests were all over the place. Negative for this; negative for that, but something was very, very wrong and my inflammation readings were through the roof. She just took a stab and put me on the antibiotic Tetracycline, and sure enough I slowly regained some quality of life. Oh and I was going through a divorce with my then husband of 10 years after being separated for a while. It was just a tad stressful.
Now, at that time, a lovely gentleman who had been my good friend for years decided he’d had enough of waiting for me and initiated a relationship. Pretty stunning considering the shape I was in. Thank goodness love is apparently blind and illogical! Dean had recently been offered an amazing opportunity in Macau, China, and insanely asked me along for the ride. I’m not too sensible myself, and happily said yes. Off we went. We were soon married on the island of Guam and settled in to our new life abroad. Little did we know the trials and travails to come.
In China, antibiotics are sold over the counter. Thank goodness for this, as on that little island no one knew how to treat me or what was going on with me. For years, I treated myself with various antibiotics and antifungals with the help of a nurse I had met online. She too had Lyme disease. The antibiotics helped for a time, but eventually I went off them and continued to worsen. Finally, I found medical intervention in Hong Kong, had multiple surgeries which required quite a bit of care afterwards.
I’m now back home in the US, living happily in Seattle and under the care of an amazing doctor. We’ve narrowed my situation down to something called dermatomyositis, or connective tissue disease with aspects of rheumatoid arthritis. And while I’m not happy about that particular diagnosis, at least I now have some idea of how to effectively treat this. I am a textbook case, and fit the symptoms perfectly. It’s a somewhat frightening disease, but I’m a fighter and don’t give up easily.
A big part of why I have made such great strides and am able to stay strong and hopeful is thanks to Dean. I would never in a million years have predicted the level of support and acceptance I have received from this man. And believe me, I have needed it. When I sat down on the couch, bawling and pitying myself, telling him I was leaving so he could find a whole, healthy woman to spend his life with and how it wasn’t fair to be stuck with me, he simply told me to get over myself and grow up! He reminded me that he was a big boy and could make his own decisions. That particular action wasn’t up to me. When I couldn’t put my hair in a ponytail because I couldn’t touch my head, he did it for me, tenderly. Same with earrings. Or opening jars. Or doors. He would happily pull me up stairs while in the Hong Kong underground, or darned near carry me down them when needed. Never a complaint or recrimination. Never embarrassed or impatient. His hand shoots out to help me up or down with an automatic frequency. He was at that hospital for every surgery, spending the night at their facilities and taking time off work to care for me. Helping me shower and dress.
I am a strong willed, stubborn gal who had never anticipated needing anyone. Boy, did I have to change and grow. It was hard. I wasn’t always gracious. But I always let him know how deeply grateful I was when I got over my childish tantrums. The only requirement he has ever had of me is that I give it my all. That I do what I’m supposed to and try my hardest. I am not always great with compliance and tend to be a little scatterbrained about medicines and paying attention to what needs to be done. I call dean my Border Collie as he’s pretty good at reminding me to take meds, to go to the doctor, pulls me back as I step out into traffic because I’m looking at something sparkly in the store window … you get the gist.
No matter what comes back at me from the tests and what pain my body contorts me into, Dean remains supportive and positive. Always saying things like “sounds like there’s reason to be optimistic” or “we’ll make it work.” Nothing is as valuable to a person with chronic illness as hearing words like that in their darkest hours. Nothing leads a sick, pain-racked person toward the light like a hand held out in the darkness. Seeing that beautiful man smiling at me with tenderness and fondness even when I’m at my worst is the surest way to put a smile on my face and fuel my resolution to get off that couch and into action. Even when my face has a rash and I walk like a wooden-legged sailor, he can find the grace to touch my face and call me a pretty girl. That’s worth a million bucks on a bad day. Thanks to Dean, I never gave up and never quit living my life as fully as possible. He wheeled me through the Venetian hotel in Macau in a wheelchair so I could go see Linkin Park a month after my two hardest surgeries. He gladly trucked off to Thailand to go scuba diving with me a month after the second ankle surgery. We blissfully hiked Angkor Watt a couple months after my knee synovectomy and spur removal surgery. He never let me down and he never lets me give up.
To you partners of people with chronic illness. You are one of THE single most important aspects of achieving remission or wellness. A simple gesture from you can make the difference in how treatment tips. A steady level of support and encouragement is often the key to helping an ill person make it to wellness. Don’t ever underestimate your power in our fight against disease. If you can quell impatience and not ever make your partner feel you are ashamed or embarrassed by them, they will work that much harder to earn that gift. I know I did. Dean stepped up to the highest level of support, and I wanted to give him the same level of commitment on my side of things.
So, what do you do when you or your partner is diagnosed with a serious or chronic illness? Many things can change in a marriage or relationship as a result. There are some basic levels of behavior and emotion that occur as a result of a diagnosis.
• Shock: It may take several days or weeks for them to be able to think about the next steps for dealing with this unwelcome intrusion in their lives.
• Fear: For those people who know very little about the illness, or those who have known someone with a very disabling form of the disease, the first reaction may be fear or panic. They may be quick to assume the worst about the disease and its potential impact on their future.
• Anger: It isn’t at all unusual for people to become angry or frustrated by the diagnosis of a chronic illness of themselves or a loved one. I spent a good bit of time being angry at first. Certainly no one asks for this kind of challenge and many react with resentment to the unfairness of it.
• Relief: For any couple that has had to wait months or even years for an explanation of puzzling, uncomfortable symptoms, getting the diagnosis can be a relief. This can be particularly true for those who have been worried about a potentially fatal disease.
• Denial: Some people react to the diagnosis by shoving it under the rug — telling themselves that it couldn’t possibly be true or that the doctor has made a mistake.
There are some pretty basic things you can do as a couple to get through this.
- Recognize partner burden and offer appropriate support
- The partner should be present during consultation wherever possible
- Address the partner’s concerns as well as the patient’s. This may help bring out issues either were afraid to discuss.
- Assess partner’s needs separately from patient’s needs
- Provide written information wherever possible
Ideally, the partner of a chronically ill person should attend some of the doctor’s appointments and be allowed to interact and ask questions. All parties involved need to be educated and feel comfortable with solutions for treatment. Dean was fully involved and went into most of my appointments outside of routine checkups. He had an active involvement and equal say in what happened with me. I would find history on the computer showing that he had been independently researching my condition and learning on his own what to expect and what it all meant.
Talk openly with your partner in a calm manner. Yes, it hurts. Yes, you’re sick. But have a conversation about exactly what you need in terms of actual physical support when you’re in a flare or after treatment or surgery. If they don’t know, they can’t give you what you need. This is often especially true when the partner is male. Men are action–oriented, and simply need direction to avoid that feeling of distress that comes from not knowing how to help. If you just can’t manage the dishes or the kid’s baths, say so.
And a side note to the ladies, I know men often don’t do it the way you would do it. Let it slide! If you man pats your knee and happily gets up to throw those dishes in the washer and throw the urchins in the tub, even if it’s a chaotic mess and water is everywhere and the plates are where the bowls should be, relax. Watch them go to action and enjoy that this is your family, and things are going to be fine. All that’s needed from you here is a sweet smile, a thank you and a smooch or three. You can sort the placement of the cabinets when you feel better!
Lastly, get counseling if you need it. Don’t underestimate the stress this can place on a partnership. It’s scary stuff. If you have a reluctant partner, seek out a doctor or counselor to bridge that gap. Knowledge can kill the fear beasty pretty quickly. And with some basic guidance from you, it can all be smoothed out. Cut them some slack when they get overwhelmed. It’s a lot to reconcile when the person you’re married to changes drastically due to illness. Let them know that you understand that, and that what you want most is to get well. That you appreciate anything they do toward that goal, and that having their support gets you there much faster.
I recognize that not everyone has the benefit of such a great husband as mine, and frankly my heart goes out to you folks. Whatever course you find yourself on, the most important thing you can do is to care for yourself. You’ll never get better if you don’t start with your own wellness on your own. And never be ashamed to reach out to someone if you need it. Stay strong, stay focused and stay connected. Here’s to all of us and the people in our lives who love and support us. We are all heroes!
[Sarah: For those of you who would like to read more on this topic, I wrote a previous column called In Sickness and in Health I said I don’t, which is about women who weren’t quite so lucky with their partners when it came to chronic illness].
Anita, thank you for sharing your story and all the great tips. I am so glad you have Dean! It really is key to have support and encouragement. My other half has more confidence in me than I do, which I realized recently more than ever. I never thought I’d need the kind of help that I did after a couple of my surgeries, especially the orthopedic surgeries. It’s not easy when you need that kind of help but when someone does it without question or complaint, and so willingly, it definitely makes you want to work harder to become well.
And you are so right about how to communicate with’men’. I learned that the hard way, but it makes a world of difference when you simply say what you need. I’ll always be grateful for all the time he took off work to drive me to the endless appointments. I’ll never forget how scared he was when I was being wheeled in for my last surgery, which lasted 7 hours. I wish he had had someone with him that day. It really is not just about ‘us’.
Thank you for this wonderful article. You are an amazing writer and person! And, cheers to all the heroes in our lives!
“Thank you for this wonderful article. You are an amazing writer and person! And, cheers to all the heroes in our lives!”
I agree with everything you said, Lori, particularly the last part! I’m very happy Anita is writing for B&P – I think a lot of people can benefit from her wise words. I’m very happy that Tom is such a supportive partner too. Your point about it not just being about us is one that is often overlooked, I think. Carers of people with chronic illness really need support too.
thank you lori, what wonderful compliments. more wonderful tho is hearing about your support and love from your “other half!” it’s what i would wish for everyone.
I so agree, Anita! My other half just came back from a business trip and now we’re about to go out for a Thai dinner with our friend Lauren who hasn’t had Thai iced tea in how eight months! She’s excited:-).
ha ha. oh yeah, it’s the little things, like creamy a creamy caffeine delivery system. heh. i’ve been rockin’ that vitamix and have all kinds of goodies to throw into it. i am finally getting greens that i normally wouldn’t eat because of it. now, if only i could get enough sun to get enough sleep at nite. funny how that works, innit??
Glad your Vitamix is going well. I know my thyroid friend Suzanne has one too. She does a lot of raw food. I’m not sure if you guys know each other? I am very familiar with the problem of sun. I’m heavy into Vitamin D supplementation right now because there’s no way I can get enough here in Germany and I really don’t spend enough time outside either.