Katherine’s Story

Katherine, and her husband Ben, share their journey with ME/CFS.

Katherine

I was made aware of ME/CFS at an early age, seeing my mom, aunts, and grandmother all struggle to overcome it. It wasn’t until college that I remember getting sick myself. From the time I was fourteen, I was waiting tables every weekend, maintaining straight A’s and generally pushing myself far past my limits. After a series of recurring viral infections and years of chronic strep throat, I had a tonsillectomy when I turned twenty-one. From this point on it felt like my body never fully recovered and looking back now, I can see how I had ignored all the warning signs.

My mom was a huge help to me in coping with my health decline, especially since I wasn’t receiving support from medical professionals or full understanding from friends. Having someone close that understands how devastating and isolating this condition can be, makes all the difference in the world.  I learned to manage alone as best as I could, and over the years even became a master at hiding my illness from the outside world.

I was able to maintain a very convincing outward appearance in all aspects of life: from the high achiever in school and at work; to the adventurous, and social butterfly at parties; and never letting anyone see fully behind the curtain. It was a constant cycle of publicly pushing and privately crashing. That is, until I met my husband, Ben.

We moved in together and married after only two years of knowing each other. I thought I had been lucky, in a sense, that his job required him to travel often, allowing me to secretly sleep for days. Then I would lie about what I had “accomplished” while he was away. Of course, as time went on, it became more and more difficult for me to hide what I was dealing with.

The anxiety and depression I developed over the years, and typically could keep at bay, was becoming overwhelming, as were my ME/CFS symptoms (non-restorative sleep, post-exertional malaise, muscle/joint weakness and pain, and brain fog). I was terrified of letting my husband see the real me, of being misunderstood as lazy or selfish, and ultimately of having my biggest fear of ‘not being enough’ confirmed.

Even though it was one of the hardest things to do, I shared everything with Ben, and it was the best thing that ever happened to me. He was wonderfully kind, and we created a plan to get my health (physical and mental) back in balance. I was officially diagnosed with ME/CFS shortly after I turned 30. It gave me the justification I didn’t know I was looking for and helped me to start living more honestly with this illness.

Most importantly, I committed to therapy and have worked to let go of the shame I built up over the years. For the first time, I mourned the loss of the person I once was and am learning to have more compassion for who I am moving forward. With the additional help of antidepressants, I’ve realized I never would have taken control of my health in this way if I hadn’t gotten sick. And though I continue to struggle daily, I remind myself that many things in my life are richer because of it – most notably my relationship with my husband and with myself, my outlook on the future, my empathy and compassion for others, and my reignited passion for art.

Although this illness continues to weigh heavily on my heart and body, having the knowledge I now have and knowing there’s a growing community of support keeps me joyful and full of hope.

Ben

ME/CFS can be a challenge but has also brought my wife and I closer together. The biggest challenge for me was understanding what “it” is. As an active person, it was tough for me to comprehend that chronic fatigue syndrome was more than just being “tired.” It is a condition that requires planning and thought to ensure you are supporting your partner. ME/CFS is a condition that is tough to understand if you do not suffer from it, so the more awareness that can be brought to it the better understood it will be.

I have traditionally traveled often to see friends and family and haven’t thought about “recovery days” or taking better flight times to be home at a reasonable time. For me, it was the “more the better.” But what I’ve learned is that there needs to be a balance to enjoy travel. Understanding that you may need to have breaks during a trip, to rest or cut a trip short to accommodate a recovery day. Although these are small changes to a trip, this is one example of how to manage healthy relationships with your spouse that suffers from ME/CFS.

As with most relationships, communication is key.  The more you can understand about what he/she is going through the more you’ll be able to support them and understand what is needed.  Knowing how and what you can do to support your spouse as they are struggling will be crucial to helping them through rough times and for you to not get frustrated. ME/CFS is a condition that can be “hid” from most friends, but once you are in a relationship living together, it will be exposed.  At first, your partner may be embarrassed of the condition, but it’s important to assure your spouse that you will support them as you work together to find a balance for your relationship.