My Reason for Research: Giving the Woman I Love the Life She Deserves

The other day I decided to challenge myself by running 5k (3.2 miles), which is 1.2 miles more than my usual run. The thought of pushing myself in that way excited me, and the rain outside just inspired me to keep running.

But the rain turned into a pour, and somewhere around the two-mile mark it became so much more difficult and very hard to see through my glasses. By the time I reached my last half-mile, my body was hurting and my vision was so limited that I wanted to quit. There were just so many factors working against my natural drive to do something so simple as running.

Then I thought of the words of my partner just before I left for my run: “Run some for me!” She was once a professional break-dancer — indeed, more athletic than I am now. And just as I was experiencing in that moment, she experiences every day what it means to have too many factors working against her natural drive to do something so simple as running.

My partner lives with hEDS, MCAS, POTS, and CSF leaks. These conditions constitute the torrential downpour, which can make something like getting out of bed, getting dressed, or grocery shopping feel like a 5k run. And the thing is, the rain never stops. And yet, she continues.

Her words “Run some for me!” were not hollow. They meant something. When she spoke them to me, her intention was that she wanted to run the distance that instead, I would run for her. In fact, she wanted to run with me — because running is an activity her body no longer allows her to enjoy.

In that moment where my personal limits were being tested, I knew that Kimberly would give anything to finish those last steps for me. And so I ran with all my heart, feeling that last stretch as an experience she faces every day in activities that so many of us take for granted.

In those moments of our personal struggles, we find opportunities for empathy with the people who feel those same struggles just in getting out of bed or vacuuming the car.

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My name is Christopher, and my partner lives with chronic illnesses.

So what is that like for me? Well, there are both a lot of challenges and a lot of moments where I get to look myself in the mirror and reflect on what kind of man I’ve always wanted to be.

One of the biggest challenges lies in finding acceptance that what is happening inside their body might not be something we can fix. The Stealth Syndrome (EDS, MCAS, and POTS) is incurable, yet there are treatments. Following the current research allows me to stay aware of the latest advancements.

Be that as it may, not all advancements in science and medicine will work for the person with chronic illness. Even if a treatment might work, the side effects might be unreasonable for the person who could benefit from it. So although it might be a tough pill to swallow, we — as caregivers — must be compassionate and able to accept when the treatment is not for them, for whatever reason.

A good example is this: imagine that MCAS has run amok inside the body of the person you love to the extent that it has disabled them and even led to intense depression, self-judgment, etc. Now imagine that you have just found the pharmacological “cure” which would, almost certainly, remove the negative effects of abnormal mast cell activity. Fortunately, our wonder drug has done its deed — but in addition, left us with suicidal ideation.

So what is better? This is part of the challenge. It’s not up to me to determine what is better for the person I love.

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Another challenge lies in the medical care my partner receives.

The medical complexity is often far too much for some doctors’ egos to handle. We get dismissed or sometimes treated as if we — the silly uneducated people on the other side of the stethoscope — are making up this slew of symptoms.

I’ve seen doctors go through complete denial, saying things like:

> “You can’t have an inguinal hernia, you see, because you’re female — and the odds of women with inguinal hernias are so low that it’s just not realistic.”

I’ve heard doctors tell my partner that because of EDS, they’re out of their depth and can’t see the hernias. Some have called her a liar outright. Others have treated her as an attention seeker.

It is so hard to grasp how completely short our medical system has fallen when a woman with EDS, MCAS, POTS, CSF leaks, and DID has to drive across the country just to find a hernia specialist who can help her.

This is not just about hernias, or any one thing. It’s consistent throughout. I’ve found that if I insert myself into her appointments and show my presence as someone who has a desired outcome and goal for her treatment, they tend to treat her better. By learning their language — if I speak to them in that language — they usually listen.

There is no room for passivity when it comes to the medical care of the person I love. I’ve come to feel that I must pick up the slack left by the doctors.

With an advocate, the difference in medical care is tangible.

Some of these illnesses are still not well known. There will be inevitable issues with diagnosis and treatment for people with the EDS trifecta. To treat it properly, you need specialists in EDS, MCAS, POTS, and their comorbidities — all communicating with each other.

There must be a medical professional who coordinates these specialists to ensure treatments keep each condition in mind. Otherwise, there may be no progress.

This idea is echoed by the experts, and it seems obvious to me. I’m offended to see my partner passed so ineffectively from one doctor to the next. I want to scream:

> “No! You are doing nothing but hurting her! When will you actually take this seriously?!?”

The result of my frustration is that I’m now slightly pissed off — and I’m going to make change happen. I’m building a team that interacts between each other. I’ll make everyone conscious of the systemic problems so we can navigate them for my partner to receive adequate medical care.

Adequate. Why should we have to beg for that?

The medical difficulties are frustrating, but they’ve given me an opportunity to be that man I’ve always admired in movies — the man left with utter respect and the impression that “That’s a real man.” I get to be the man I look up to by being the man my partner deserves.

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Shifting gears...

I want to share a little about what it’s like for me, both mentally and emotionally, to love and care for somebody with chronic illness — the things I find joy in, and the aspects that hurt.

I have an abundance of love for my partner. I choose my partner every single day, always knowing that part of our life is spent in the company of chronic illness.

There is never a day where I feel she is burdensome or overwhelming because of her pain or emotions. I always feel compassion in those moments, and they lead me to think of others who are treated as if they weigh down the people around them.

My heart would hurt if I were treated that way. Knowing how my own feelings would be affected, I always want to be the safe place my partner deserves.

It’s important for all spouses or caregivers to remember: they did not choose to have chronic illness, nor is it something they can control. I often imagine myself in her shoes. I would need reassurance, connection, and to feel important — functional in our relationship.

Imagine how easy it might be for you to begin feeling that the love you show isn’t adequate compared to how deeply your partner loves you. That’s a tough truth — because many who struggle with chronic illness tend to feel they’re not giving enough support and love in return.

The answer is not to take their care and love for granted. It’s worth its weight in the stacks of spoons for which it was created.

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How can we show up for each other?

One of the things that means the most to me is a sort of “check-in” we do — anywhere from one to five times a day. We go down a list of our mental states, emotional states, pain levels, and energy levels (“spoons”), and ask what we can do for each other.

This level of communication is something I’ve never had before. It makes me feel safe, seen, heard, loved, and supported. It also gives me a way to know — at any time — exactly where she’s at, so I can show up for her and vice versa.

It allows both of us to refresh our intensity, our levels of care, and whether we need space or not.

In these moments I see how much my partner — no matter her pain — really puts in the work. I see her efforts in these check-ins, and in how she dives into my activities so I feel seen and heard. She notices my subtle cues when I’m feeling off, even when I don’t realize I’m giving any.

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At this point, I think I’m rambling, and I’m a little unsure how to say what I want to say. I could go on for several chapters writing about being the partner of someone who lives with chronic illness.

But I’ll end with this:

My life with Kimberly is not a life where I cope with having a partner with chronic illness. I don’t cope. That’s because — actually — her physical problems pose no problem to me or our relationship.

I met Kimberly as she was experiencing a cascade of effects caused by the EDS trifecta, and I fell in love with the person she is — despite her physical state.

Will we face battles with her physical health? Yes. That’s a fact. And I will always fight alongside her to help her obtain the best possible quality of life, given our circumstances.

Her medical complexity is a puzzle I’m coming to understand more and more, which gives us hope for our future. Our relationship improves as we find more ways to create meaning, purpose, and fulfillment.

Being the partner or caregiver of someone who experiences adversity like this isn’t always easy — but what relationship is ever easy?

Aren’t we always going to have compromises and unique ways of doing things for the people we love? Is there really anything “hard” about increasing your level of care for the person you love?

It will always be difficult to see the love of my life in pain — but I wouldn’t dream of running from it. She can’t run from it.

And so, when things get hard, I’ll forever go back to the moment I needed to dig deep inside — when, even over the heavy rain, all I could hear was her voice saying:

“Run some for me.”