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The Challenges of Living with an Invisible Illness

How to cope with questions, judgment, fatigue, and guilt.

Key points

  • Those with an invisible illness or disability often face continual judgment from others.
  • Symptoms such as fatigue and brain fog can lead to feelings of anger, isolation, and helplessness.
  • Coping skills include lowering your expectations, picking your battles, and practicing self-compassion.
Justice Amoh/Unsplash
Source: Justice Amoh/Unsplash

I didn’t give much thought to this topic until I experienced my stroke. Suddenly I was coping with a brain injury, fatigue, anxiety, depression, chronic pain, and epilepsy. But as I struggled physically, I looked perfectly fine to the outside world.

An invisible disability or illness is simply a medical and/or psychological condition that isn’t obvious to others. Aside from the challenges of facing each day, one of the most difficult and often hurtful consequences is the lack of understanding from others. Those with invisible disabilities are frequently faced with comments, judgments, and rude questions. Some people may perceive us as lazy. The reality is that we are trying to deal with a condition(s) that leaves us feeling drained, mentally and physically.

Navigating Questions and Judgment from Others

Constantly feeling as though we need to prove that we indeed have several challenges can be frustrating and exhausting, especially when many times we feel as though we’re running on empty. Realizing that we will probably face judgment or ridicule when going into public can cause feelings of anxiety. Often, I resisted leaving the house because it’s just easier to stay home. If I'm at home, others don’t see my struggle; they don’t see my challenges. They don’t roll their eyes at me, call me stupid, push me out of the way, or cause the many other situations I have faced.

We frequently deal with a multitude of questions about our disability or illness and this can be draining. These questions can cause us to doubt ourselves. Sometimes I let doubt get the better of me, and I wonder, "Am I an imposter?" When others assume it’s all in your head, it can make you question your reality.

If you are doubtful about your illness/disability, then this can cause you to resist treatment or not follow through with a treatment plan. This could have serious consequences. I doubted myself and resisted treatment for my depression. I continued to spiral downhill, and it ultimately became so severe I had to be hospitalized for treatment.

Fatigue, Brain Fog, and Other Challenges

One of the biggest challenges many of us face is chronic fatigue. This can be physical and mental. Many times, we are unable to complete tasks or participate in activities because of exhaustion. This is frustrating and can cause feelings of anger; there are things we want to do, but fatigue gets in the way. It is challenging to explain to others, and they may pass judgement. “Why are you being lazy?” I often feel lazy myself, even though, intellectually, I realize this is a result of my stroke.

Source: Hedgehog-digital/hedgehogdigital-co-uk
Source: Hedgehog-digital/hedgehogdigital-co-uk

Brain fog is not a medical condition itself but rather a symptom of other medical conditions. It can interfere with memory, clarity, concentration, comprehension, and an ability to focus. Living in constant pain, whether it be physical or psychological can have a debilitating effect on our daily lives. As with fatigue, it can cause anger and frustration as it prevents us from enjoying many of the activities that used to bring us joy. We may become isolated and feel helpless as it interferes with the activities of daily life. Again, we can face ridicule and people who assume that it’s all in our head. Even health care professionals may be dismissive and label us as “drug seekers.”

It would be impossible to list all the challenges that those living with invisible disabilities or illnesses face; they are virtually limitless.

The Burden of Guilt

. Ben White/Unsplash
Source: . Ben White/Unsplash

I’m sure I’m not the only one who has heard “but you look fine to me.” Hearing this from others can cause us to believe that it’s all our fault. We can feel as though we are letting those we care about down. I continually beat myself up because I’m unable to work. I frequently ask for help and am unable to function at the level that others expect. Feeling like a burden or that we’re not achieving enough can lead to feelings of guilt. I find myself constantly apologizing for something that is totally out of my control. Even though intellectually we realize that none of this is our fault.

You may need to cancel or change plans because of a flare up or bad day. You may feel that you are letting your friends and family down, especially when you see the disappointment in your children’s eyes when you are unable to play with them.

Realizing how your disability or illness is affecting your partner’s life can also cause feelings of guilt. Many times, I’ve said to my husband, “You didn’t sign up for this.” I feel as though I should be doing more, or I’m not trying hard enough, even though I know this isn’t true.

Coping Strategies

  • Let go of expectations. They can often lead to disappointment.
  • Find support through friends, family, and groups.
  • Drop the guilt. It serves no purpose.
  • Seek professional help to best manage your symptoms.
  • Experiment with activities that bring you joy.
  • Realize you can’t control others. Don’t allow others’ negativity to bring you down.
  • Pick your battles. Evaluate whether it’s worth your energy.
  • Be kind to yourself.
  • Spread awareness: When able, inform others about life with an invisible disability/illness. Maybe, just maybe, you will open their eyes and help them learn to be kinder and less judgmental. We can only hope!
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