Hello dear readers.

I have been away from both blogs for a little bit lately. My pain has been horrible, uncontrollable, and making me wish it was all just over. Its hard not to have those thoughts when you live with the pain I and others do. I’m still not feeling well enough to write, so my husband and care taker wrote a post for me from a caretaker and spouse’s point of view. Please welcome Jason Thompson.

When my beautiful wife was first diagnosed with Chiari in 2013, it changed our lives forever in ways we never could have imagined. It has created new obstacles, unforeseen challenges and persistent frustrations. However, despite all of those hurdles, it has also given me a deeper appreciation for what matters most in life, and an even deeper appreciation for the incredible woman I married almost nine years ago.

The transition hasn’t been easy for either of us. It’s not just a few minor changes; it’s a whole new way of life. Being married to someone who suffers from a chronic condition like Chiari and EDS means taking on new responsibilities, but it also means finding new and meaningful ways to support your partner. For too long, I thought that just meant getting up early and doing the dishes or folding the laundry (and yes, taking on a larger share of the household responsibilities is certainly part of the equation). What I’ve come to realize is that supporting a partner emotionally is far more important than chore you might complete around the house.

Loving someone who lives with chronic pain is a constant struggle because the pain can twist their mood and outlook in awful ways. But that same sweet person still stands in front of you, crying out for understanding, acceptance and love. Pain takes away so much; loving someone who is in constant pain means finding new ways to give our loved ones a life worth living.

If someone you love has been diagnosed with Chiari, EDS or another condition that causes chronic and debilitating pain, here are several pieces of advice I’ve found to be invaluable.

Support, Don’t Demand

One of the areas where my wife and I have struggled most stemmed from my habit of dictating what she should and shouldn’t do based on her pain. It’s OK to have a conversation from time to time to voice your concerns if you suspect your loved one may be doing something that is counterproductive or even a little bit dangerous. However, this doesn’t mean you should treat them like a child. Allow them listen to their bodies and do what they are capable of doing. Be willing to discuss their capabilities and limitations, and offer suggestions of ways you can support them rather than making them feel like an invalid. Having an honest discussion about these sorts of things is paramount. But lecturing your loved one and treating them like a toddler will only breed resentment.

Listen

This one seems like it should be obvious, but I can’t tell you how many times I’ve caught myself trying to “fix” my wife’s problems as quickly as possible when she says she’s hurting. Sometimes, my first inclination isn’t to listen; my priority is always to do whatever I can to make her feel better ASAP. In many ways, I think that’s a natural male instinct to adopt the role of a protector, and many parents doubtlessly feel the same instinct with their children. But oftentimes, your partner or loved one doesn’t need protection or a solution. They just need someone to listen and understand what they are going through, and to be able to connect with another human being. Pain is isolating, so when someone in pain reaches out to you, the best thing you can do is reach back. Not with a bottle of pills or a list of activities they should or shouldn’t do, but with an open hand and a sympathetic ear.

Be Patient

As I alluded to earlier, pain can often bring out the worst in people. But it is important to realize that the anger and depression associated with chronic pain won’t last forever. Someone in the throes of pain might withdraw or lash out when they are feeling their worst. Understand that if you respond to that negativity with more negativity, you only have yourself to blame. Instead of responding to a terse or angry comment with frustration or angry, focus on the reasons why they might be reacting in a negative way. If you know they are in pain, suggest ways to help. If that fails, give them reassurance that you care about them, and be willing to give them some space if necessary.

Most of us don’t fully comprehend what it’s like to go to sleep at night wondering if we’ll wake up tomorrow in too much pain to even get out of bed. I’ve heard too many stories of people who have Chiari whose partners jumped ship because they couldn’t handle the situation. I often wonder how many good relationships have gone down the tubes due to an unwillingness or inability to adapt to a partner’s disability, and more importantly, how many goodhearted people have been cast aside due to simple misunderstanding or just plain selfishness. In the end, leaving behind a good wife, husband or loved one due solely to their medical issues will never enrich your quality of life.

Patients who have chronic conditions don’t have a choice. They have to live with pain and physical limitations every day. But everyone around them has the ability to make a choice. We can decide whether to reach out a helping hand, offer a shoulder to cry on, or even just provide a sympathetic ear. Believe me when I say that every time we’re willing to make that kind of choice and give a little piece of ourselves, that love is appreciated more than we could ever possibly fathom and returned tenfold. And perhaps just as important, it shows us the love we have within ourselves.

When we are in pain, we don’t always take into account how those around us are feeling, nor can they truly understand what we are going through. I hope this post will be able to help some of you talk to your loved ones, and help them understand what we are going through.

 

Stay positive my dears!

 

Christina