Each and every day, I’m fighting to challenge the perceptions surrounding chronic fatigue syndrome (CFS), whether it’s with well-intentioned family or friends, skeptical medical professionals or random acquaintances who want to sell me the “special” supplement that healed their great aunt.
Walking through life with this disease has been both a battle and a blessing for me over the past three years. It has turned my life completely upside down. It has impacted my health, fitness, social life, finances, living situation, independence and career. There have been plenty of hard days, but surprisingly, many moments of joy, too. However, one challenge I end up facing time and time again is not from the disease itself, but from those around me and their understanding of this disease.
So here are the five things I wish people understood about my chronic fatigue syndrome:
1. It’s not about being tired.
Yes, I’m tired. However, someone with CFS can be so fatigued it can feel like you have run a marathon with the flu. And that’s on a good day. It’s a type of tiredness that is beyond what you could start to articulate. This complex disease can affect all parts of your life and many bodily systems. A cognitive brain fog clouds your thinking, nausea doubles you over day in and day out, joint and muscle pain throbs and burns and you can’t move, the constant flu-like state, the dizziness when you try to stand and the respiratory distress from when your body is so exhausted that the simple task of breathing becomes a labored affair.
Unfortunately, it’s not a case of getting more sleep. I could have a lovely 12 hours of sleep at night and wake up feeling like I have been hit by a truck. Or I could be kept awake by pain or insomnia all night and function no differently the next day. Sometimes I wish I was simply tired.
2. What you see is not what it appears to be.
CFS is an invisible illness. Looking good doesn’t equal feeling good. I often wish people would see past the well-presented, mostly articulate and smiling woman in front of them. Even close family and friends haven’t seen the full extent of this disease on my life, especially when my symptoms flare in full force. You won’t see me out of the house when this is the case.
If, however, I have enough energy to go out on a certain day, I will factor in the energy required for everything from dressing well to putting makeup on to cover the bags under my eyes.
What you won’t see is the five minutes I sat on the floor of the shower when standing in the heat got too much. The three times I had to lay down to rest before leaving the house. The pain throbbing through my body as I moved, and the headache pounding right behind my eyes as I tried to keep up with the conversation around me. You won’t see the rest of the afternoon I spent in bed after being out of the house for just an hour.
3. The battle takes place every day.
With a fatigue-based disease such as CFS, a person only has a certain pool of cognitive, physical and emotional energy that can be accessed each day. Most days, I hope this energy reservoir will extend to having a shower, dressing and eating. But some days it won’t. I have long since outsourced my shopping, cleaning, washing and the majority of my cooking. Some days I run out of energy to eat. Other days I can get out and have a coffee with a friend. Then there is the countless medical appointments that need to be endured.
It’s about finding balance, making choices about what I will use my energy on and then dealing with the consequences if I use up too much energy. If I use too much energy, the delayed fatigue will kick in, my body will crash and I will be unable to do anything besides lying in bed for many hours or days. Unfortunately, there are unexpected curve balls, and the carefully balanced week or day gets thrown out the window. Instead, you’re left trying to make your energy ends meet while rapidly trying to steal energy for the days ahead.
4. It’s expensive.
I’m not just talking about the financial strain of medical bills, medication, supplements, specific diet and being too unwell to work. I’m talking about the huge cost on the rest of your life. It can take a toll it on your career or dreams, as others around you get the promotion you always wanted or get married while you find it difficult just to make it out of bed each day.
Then there’s the cost of not being able to care for children, spouses, family and friends. Not being able to be physically present to witness special moments in the lives of those close to you. The strain on relationships when you feel you just need to keep taking and not being able to give in return. Friendships drift apart since you have to keep turning down invites. Soon, they stop asking altogether.
Lastly, there’s the cost on your self-esteem, as the once fit and healthy body gains weight, reacts to medication and may only be able to walk as far as the mailbox each day.
5. You can’t do it alone.
You can’t survive chronic fatigue syndrome alone. It’s lonely, it’s isolating and it’s a battle each and every day. People don’t buy you flowers when you have a chronic illness, and people can get sick of hearing about a disease that continues to affect your life day in and day out. You need people on your side. People who are willing to be in there for the long haul. You need supportive friends and family who are happy doing your washing, who will still drop meals off three years into your illness, who give you lifts and sit on the couch eating tasteless, cheeseless gluten-free pizza with you. You need text messages and prayers. You need friends reminding you of your hope. You need people who look past your “I’m fine” responses and see the truth. You need medical professionals who are willing to fight alongside you, never doubting the disease and it’s huge impact on your life.
You need people who understand chronic fatigue syndrome. People who get it. This is what I wish for.