5 ways living with undiagnosed illness in the family is stressful

I couldn’t have articulated it at the time, it was too overwhelming. 

But now all these years later, and with the help of A Chronic Voice‘s  Link up prompts I’m able to explain some of the things that made the initial years of Soeun’s sickness so hard. I also want to share this with the Velvet Ashes community while the theme is "marriage".

My husband was consumed by an incapacitating, invisible, incurable disease. I didn't have any of the physical symptoms but it had a huge impact on me. 

The stressors listed here are about what it was like before we had a diagnosis; he is still sick but now but we are not in crisis. We have a name and a way to manage it.  Although some stressors are still part of our life this list is mostly in past tense. 

I’m thankful for chronic illness websites and counselling that helped me identity these stressors , I hope this list can help you and your family too.

Prompts this month: Adjusting. Hoping. Surviving. Befriending. Awakening

 1. Adjusting to unexpected change

We didn’t know we were adjusting to a new normal. It only dawned on us years later. We weren’t given a warning or time to prepare. It took us by surprise. And even after the symptoms started we kept making plans, thinking that he would get better soon. It was always about waiting to see the next doctor to work out what was wrong and how to cure it.

2. Hoping in vain for health

I was always eager to see what was around the next corner. What would the next doctor say? What would the next test results reveal?  Always hoping there will be answers or something new to try.  It was horrible seeing Soeun in pain for so long, I kept hoping it would end. Surely he will be healthy in a few weeks’ time? The frustration of watching him in pain and not knowing why motivated me to keep waiting to see that next doctor, or try that lifestyle change.

 3. Surviving without him

“When will my husband get better?” morphed into “Will he ever get better?” and we just had to live day by day.

A heavy pile of symptoms had swallowed him up. It was hard to imagine him ever coming back to life. Physically present, with all normal test results, looking healthy- but it felt like he was absent. I missed the person he was before he got sick.

Without Soeun daily stressors were harder to cope with; I was used to talking to him about everything. Happy experiences also became hard to deal with as I had been used to sharing everything with him. I discovered it was hard to enjoy anything if Soeun couldn’t enjoy it too. I didn’t know how to function without him, or even how to articulate that’s what was happening. And it felt selfish to focus on my own pain when I wasn’t even the sick one.

Living with uncertainty. Not knowing why he had gone, or having medical acknowledgement that something was wrong, not having a treatment plan, not knowing if he would come back to life or if he would be like this forever? Or would he actually die? Just surviving.

4.  Befriending and social isolation

We had just moved to a new community when the symptoms hit.  People started befriending us...well trying to anyway. When we were invited to events it became to frustrating and disappointing. We would say “yes” to an invitation but on the day Soeun would be sick so I would end up going by myself, or not going at all.

As a few one-offs that’s kind of OK, not so OK when it becomes the norm. I hated not being able to keep commitments, not being able to show people they are important to us by spending time with them.

It became easier not to make plans, and then we didn’t have the disappointment of breaking them.  So I came to dread invitations, but also dreaded that people would give up inviting us.  

The Chronic Traveller has a more poetic way to describe this- The Well of Despair.

5. Awakening and unsolicited medical advice.

I didn’t have a way to describe this at the time; it was a nameless struggle. When we shared our medical issues with people they tried to help- so why did that make me want to scream? I should be grateful for help.

It wasn’t until years later I came across websites such as The Mighty, Fruitful Today and My Migraine Brain and found others had the same struggle. The awakening was such a relief and I allowed myself to feel the bitterness that had confused me at the time. I was able to move on from delayed bitterness when I read words from a Christian teenager:

"I have to choose to respond graciously and not be bitter towards people for misunderstanding what I’m going through. They have never been chronically ill so they can’t possibly know how hard it is. Jesus has demonstrated so much grace toward me and He is teaching me to reflect Him in my relationships."

Ally, on Fruitful Today

This issue was described in a positive way recently by Erica on A Chronic Voice 7 ways to be a better friend to the chronically ill:

"2. Listen Without Trying to Provide a Solution

Sometimes I’m just frustrated and complaining. I’m not looking for you to fix the problem – I just want someone to listen. I’ve more than likely tried or heard the suggestions or advice you have to offer. Listen with an open mind and really hear what I have to say."

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Its seems partners of the invisibly ill are likely to either end up with their own health problems too, or the relationships breaks down. I don't have any stats on that, just from the situations I've seen. When your partner keeps saying they are sick but the doctors say they are fine it looks like they are lazy and unwilling to pull their weight;  leaving may feel like the only option for some if this goes on over time.  I refer to Soeun's sickness as '"our sickness" which sometimes ends up being confusing, but its a mindset I find helpful.

Its only in recent years I've had counselors who listened first and found out the actual issue. My pain was seen, they used words like grief and trauma. At the time, all those years ago I didn't know how to explain it, and the only help I received didn't seem to have any positive impact. 

If its a choice between divorce and PTSD, I'm happy to take the trauma. But hopefully there is something in between. If you know someone in this situation it might help them to find ways to work out what is happening for them emotionally.  In last month's linkup I wrote about this under Allowing Emotion and posted some grief resources which might be helpful.

 Photo by Tony Rojas on Unsplash