10 Feelings That Alternate in My Mind as I Live With ME/CFS

For someone in reasonable health, it can be hard to understand what a loved one is going through if they are struggling with some kind of ongoing health issue. It’s especially tough for everyone if the illness is one which is unseen, as in, no obvious signs of the illness – like how you can see a broken bone in an X-ray or a result in a blood test.

I have a chronic illness and below is a list of things I feel on an alternating basis – hopefully this gives you some insight into what could be going on in the mind of someone you know with some health challenges. Or, if you’re struggling yourself, hopefully you recognize some of these and know that you’re definitely not alone.

1. Guilty. This is the most common feeling. I feel like such a burden to those around me. With regard to work, initially I felt particularly bad for my colleagues who had to pick up my work when I left. I’m on indefinite sick leave and now when I think of work, I feel awful that they have this sick person in the background they have to keep considering. And when it comes to my everyday life I can’t just walk the dog or do the vacuuming. My husband has to do a lot of the heavy lifting in our lives, including being the sole income earner. Guilt! I also need people to drive me to appointments which I feel awful about because I can’t even drive myself anywhere…more guilt. I know if the shoe was on the other foot I’d hate it if the person needing my help felt guilty, but hey, I can’t help feeling like a burden when my contributions feel so limited.

2. Misunderstood. This one is two-fold:

a. There are a lot of misconceptions about people with ongoing health issues, especially when the issue can’t be seen from the outside:

Are they making it up?

Are they just “soft?”

Are they even that sick?

Sometimes I wish people would realize what a miracle it is that I’m even out of bed and managed to get dressed some days. It’s awful feeling like people don’t believe you or that they have inflated expectations around what you can do simply because you look fine.

b. Constantly having to remind people that I can’t do certain things. A main example is me being unable to walk as far or when I need to stop. In the early days I’d have to physically sit on the ground in places like the supermarket because the people I was with didn’t understand, and I didn’t know how to say “I need to stop” until it was too late.

“Treat me like a 95-year-old,” I’d tell people to try and help manage their expectations around my activity levels. I also feel like a huge downer having to constantly tell people that I have to stop, or that they’ll view me as weak.

Not fun.

3. Frustrated. When you just want to do any myriad of things that you either used to be able to do, or that “normal” people can do. Things like driving myself to the supermarket or having the privilege of groaning at my alarm in the morning before work. I also find it frustrating when you daydream about your past life. Most people dream about the future and how their lives could be. For me, I just dream about how things were and think about how much I miss my previous life. I have so much unfinished business, especially around my career; it’s really frustrating to think about how something I literally had in my hands now has such an uncertain future.

4. Grateful. Goodness I am so grateful for all the help I receive! My amazing husband who goes above and beyond every day without a single complaint. My incredible family for all the constant help they give including driving me all over the place to appointments or helping around the house. And my beautiful friends who will send me a thoughtful text now and then or come and collect me so we can catch up. I’m also incredibly grateful for the elements of good health that I do have. For example, my arms and legs work, I get relatively normal sleep, I don’t have a terminal illness…and the list goes on. My work being so good to me is also a huge relief. Despite everything I’m still so grateful to be here.

5. Lost identity. A lot of my identity and feelings of self-worth were derived from my work and my friendships. I was proud of my career and I relished that feeling of having a great day at work. Not having my career at the moment has left quite a hole. Not to mention awkward “What do you do?” conversations if I’m somewhere socially. I also used to see my friends a lot more. Aside from my issues physically getting to catch-ups, I will struggle with feeling like a sad-sack as I don’t know what I have to offer conversations given I barely do anything. My illness also occurred around my 30th birthday, which I have noticed is a time a lot of my friends are taking stock of their lives. I feel like so much for me is up in the air, sometimes it’s hard to put my finger on who I am anymore.

6. “My career is in the toilet.” This is true whether you’re struggling at work, or unable to work entirely. It’s also a particularly painful one for me as I loved my job and personally feel like I have a lot to offer career-wise. I’m now three years out of work and I definitely didn’t reach my career goals, but I was close and goodness it’s irksome. Things started deteriorating for me about six months prior to leaving work and I also hate the feeling that what people might remember of me is my below-standard performance as I progressively got worse. I’m also pretty scared of what I could do when I return to work. On one hand, I can’t wait to return (I even dream about it), and on the other I have a lot of anxiety about how I’ll go. A specialist told me that adults rarely fully recover from chronic fatigue (which I’m choosing to disregard), however, I can’t help but have it lingering in the back of my mind. Will I even be any good when I do finally return?

7. Useless and/or worthless. These are pretty sad words to feel and when I do feel these things, these are my lowest points. There’s one thing to be physically unable to do what you previously could, then there’s another thing when you feel like the sum of what you have to offer doesn’t add up to much. Luckily, I don’t feel these feelings often, however the continuous need to rely on others and my constant feelings of an inability to contribute can easily leave me feeling like I’m not really worth much.

8. Helpless. I’m someone who loved solving problems and was always quite independent. So, for me to have a situation where I’m unwell and there’s virtually nothing I can do about it, it’s tough. Some days I feel deeply helpless, like I have no say over how my life unfolds. And other days I accept that all I can do is keep trying new things and do the best I can with what I still have. Luckily, the helpless days are getting fewer and fewer as I gain greater acceptance over my situation. Gratefulness also helps to combat these negative feelings.

9. Robbed. This was especially common in my first year and it’s a very deep-seated feeling. I felt like my life had been stolen from me. Before I became unwell I was in a prosperous period in my life, I was doing well at work, recently married and looking to enjoy my time before starting a family. The future looked bright. After becoming unwell, I felt that these precious years have been taken from me. My career is practically gone, my friendships have changed and my relationship has been tested. What’s left of my youth is fading and the future is now a scary thought when before it was so hopeful. I was very angry about this for quite some time and would feel as if I was grieving my “former life.” My psychologist, however, taught me to see that I can still get value out of my life – it just requires some expectation-tweaking as I learn what’s still possible despite my illness.

10. Proud of myself. It’s important for me to remember this one! When you’re unwell you really learn a lot about yourself and I have learned how mentally tough and resilient I am. Most days I walk around with a smile on my face and can see the positives in life. And it’s my positive attitude which gives me my resilience and the ability to accept my situation. It could easily be the other way around and I can completely understand why people in my position could be really down about it. The key for me is to accept the negative feelings when they arise and not try to fight them. Accept that they’re there then focus on the positive things to turn around how I’m feeling. I’m proud of my ability to cope and I need to remind myself of this more often.

Having an ongoing illness can really turn your life upside down, bringing a complex array of emotions with it. For someone on the outside looking in, it can be difficult to know what an unwell person is thinking and feeling. Hopefully the above helps you to better understand your loved one’s situation. As with anything, individual experiences differ so if you’re ever truly unsure, you can always just ask! I like the phrase, “Help me to understand what you’re going through or feeling.”

Photo by Eddy Lackmann on Unsplash