I recently moved to a new home. One afternoon, while chatting with some of my new neighbors — both of whom had several children — one of them asked me what I “did."
“I stay at home,” I said.
“That must be nice,” said one neighbor.
I explained that I had a lot of health problems that prevented me from working.
“Well,” the neighbor amended, “that must be nice when you're well, at least.”
That conversation has stuck with me ever since — a perfect example of how difficult it can be to explain a chronic invisible illness to a friend or acquaintance. I found myself struggling to find a way to clarify that really, I am never “well," according to most standards. Like many people who live with chronic illness, my life is more a matter of "more sick" and "less sick," rather than "sick" and "well."
Living with a chronic invisible illness or disability — something that isn't easily apparent to those around you — can be frustrating and even, at times, disheartening. Not only is it often hard to plan your days around chronic pain, fatigue or illness, it can be equally hard to deal with friends and family who have a hard time seeing past the fact that you “don’t look sick".
However, with patience and compassion — for others and yourself — it's possible to live a rich, fulfilling life, even with a chronic illness.
Recognize your limits
When living with any kind of chronic condition, it's important to recognize your limits. It can be tempting to push yourself too hard, especially in a society that praises those who push past the outer limits of endurance, but doing so usually results in more pain, fatigue, and limitation down the road.
Learn to conserve your energy and recognize your limits, so that you are able to enjoy the tasks you are able to do.
Learn your body
Every chronic illness patient is different, and what works for one might not work for another. Keep track of activities that lead to increased pain or fatigue, as well as activities that help rejuvenate and relax you.
Identify any triggers — such as food, environment, or poor sleeping habits — that cause your symptoms to worsen, and try to avoid them. Learning which things help or hurt you, personally, can help lead to more effective management of your chronic condition — and a happier, more fulfilling life.
Remember that even insensitive comments come from a place of love
When you're living with an invisible illness, it’s hard not to feel bombarded by ignorant and insensitive comments. “But you don’t look sick,” people will often say. Some may try to convince you that it's “all in your head” or that you’re just not “trying hard enough." Frequently, friends and family may load you with vitamins, supplements, and other “miracle cures," or encourage you to push yourself harder and forget your pain or fatigue.
It's important to remember that, even the most insensitive-sounding comments are coming from a place of love and caring. Usually, it's difficult for friends and family members to understand just what goes on in the life of a chronically ill person, and they're trying to reach out and show their love in the best way they can.
When you find yourself on the receiving end of an ignorant or insensitive comment from someone you love, try to accept it in the spirit it was intended, then move on. Remember that only you can know what is best for your lifestyle, and only you can understand your own limitations.
Be honest with those around you
It can be frustrating when others don't understand what you're going through. When you have an invisible illness, often that's the case. Because others don't see the time and effort that goes into accomplishing even the smallest of tasks, they may focus on the fact that you look normal.
While it can be tempting to always put on your best face when around others, it's important to be honest about what you’re experiencing. In a gentle and loving way, try to help those around you understand what you’re facing. If appropriate, explain how pain or fatigue makes your daily life difficult, or describe how everyday tasks such as household chores can become too much for you to handle. Invite friends and family to ask questions in order to better understand your condition.
It’s OK to have conflicting feelings
When you struggle with chronic illness, sometimes, it can feel like you're at war with yourself. Like everyone, you want to look good and seem “normal.” At the same time, it's frustrating when others don’t understand your limitations. You may feel caught between the need to “prove” to others that you’re really sick, and the desire to present your best self to the world.
It's OK to feel conflicted. Navigating life with an invisible illness is tricky, and the desire to look normal along with the desire for your illness to be taken seriously are natural. Be gentle with yourself, and don’t forget to have a little extra compassion for yourself and those around you.
Although living with an invisible illness or disability poses many unique challenges, it's still possible to have a wonderful and rewarding life, in spite of pain and fatigue. Always remember to honor your limits, learn what works for you, and be patient with yourself and others.
As difficult as it may be, an invisible illness doesn't have to stop you from living a life filled with happiness and satisfaction.