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Invisible illness: How to support someone you love

The word chronic written on page

If you have a loved one that is dealing with an illness that manifests in a way that doesn’t necessarily show physically, you may have heard a few frustrating remarks, including “Well, they look OK at the moment,” or “Oh, this must be a good day.” Those same people seldom realize that the person with the invisible illness is likely going through a painful struggle inside. A lot of people forget that simply because someone looks healthy, it doesn’t mean that they are not suffering with a chronic illness.

What are examples of an invisible illness?

Venus Williams, a Wimbledon tennis champion, has recently been diagnosed with Sjögren’s Syndrome. Sjögren’s Syndrome is an example of an invisible illness. Why?

It’s a chronic autoimmune illness that no one would know she had if she didn’t open up about it. You can bet that many people upon seeing her have said words like “She doesn’t look sick,” while her immune system was at work damaging healthy parts of her body.

Like many other chronic illnesses, Sjögren’s Syndrome works invisibly. Some other invisible illnesses are:

  • Chronic pain
  • Depression
  • Diabetes
  • Cancer
  • IBS
  • Allergies

And there are many more. For those who have an invisible illness, they have probably experienced the frustration of people simply not understanding that they are unwell because they look fine. It is just one of the many misjudgments that people living with a chronic, invisible illness have to face every day of their lives.

The fact that it can’t be seen makes it extremely hard for many people to understand how to help a loved one who is dealing with an invisible illness. Also difficult is how to understand what they go through daily. You might feel entirely useless while watching your loved one in pain.

Ways to support someone with an invisible illness

Here are a few ways to help and support your loved one who has an invisible illness:

Learn about the mental health condition

Your friend or family member likely doesn’t want your pity or to be left out of everyday life because you believe they won’t be up to it. Instead, it’s extremely helpful for both you and your loved one if you take the time to research their illness.

Doing so can help you to understand what is going on during their good days and bad days. For example, a good day doesn’t mean they feel illness-free.

Instead, it means they feel slightly more capable today and in less mental or physical pain than on a bad day. Most of all, your research will help you to learn not treat them differently. They are still the same person, and the invisible illness does not define them. You need to show that you understand that, and love them no matter what.

Accept that you can’t cure their pain

This one is tough. Watching your loved one suffer can be one of the hardest things you will ever have to do.

You will want to help them in every way possible and try to cure the pain that they feel. However, Googling the best marijuana strains for pain relief may not be as helpful as you think. That’s because no matter how much you want to, you are not capable of crying away this invisible illness or your loved one’s pain.

Yes, it sucks. But really the only thing you can do is validate their pain. And that probably means more to them than you might at first realize.

Let them know that you understand why they are not able to do as much as they used to do, for example. Also, tell them it’s okay when they have days when even getting out of bed in the morning is difficult. That understanding will mean more to them than any pain killer you could offer them.

Be patient

It’s important to remember you can’t see what is going on inside your loved one. If they are incredibly irritable one day, then lethargic and quiet the next day, don’t get frustrated with the changes in their mood.

Their illness is not going to stay the same all day every day. Instead, they will have ups and downs. And with those changes, their moods can alter suddenly and frequently.

It will be helpful for you to understand why they might be reacting in such a way to you, and to know when to give them some space. Though you want to take care of them as much as possible, they won’t want you to smother them. Instead, they likely want to retain what is sitll left of their independence.

If you are ever unsure whether your loved ones need alone time or a cuddle, it’s OK to ask them. Indeed, they will appreciate the concern and gesture.

Be selective about who you tell

Of course, just like your loved one, you will need to get off your chest any feelings caused by the effects of witnessing a chronic invisible illness. But, always be respectful of your loved one’s wishes.

Thus, it’s a good idea to check with your loved one if it’s OK to share their personal information with your friends or your partner. Respect their wishes if they do not want the information to go any further than you or close family. No matter their reason.

Watch for warning signs

Chronic pain is an example of an invisible illness that often goes hand in hand with mental health. If your loved one can’t carry out life like before, are unable to work, and have several bad days in a row, that can negatively affect their mindset. Over time, they can spiral into depression.

Thus, it is important to recognize warning signs of mental illness in your loved one. And talk to them about getting professional help if they need it.

With that being said, always respect their wishes if they are reluctant to seek help, unless they become a cause of harm to themselves or others. In that case, it’s vital you seek further help for your loved one for their own safety or the safety of others.

Also, if the invisible illness affects you deeply and you’re having more low days than usual, you might need to speak to someone or seek help for how you’re feeling. Of course, you will always want to put your loved one first, but at the same time you need to be healthy to look after your loved one. Talking to Samaritans or a professional therapist could help you or a loved one cope with the invisible illness that is now a major part of both your lives.

Final words on supporting someone with an invisible illness

As much as this time will be difficult for you, remember it is even more difficult for your loved one. Be patient and try to understand what they are going through to help your loved one.

That, and showing them as much love and support as possible. It will eventually get easier to deal with the invisible illness as you both learn more about it. But that takes time and is usually the process is slow. It takes a lot of understanding for both of you.

51 thoughts on “Invisible illness: How to support someone you love”

  1. Thank you so much for this GREAT post. I’m going to print it out for my family. My family avoids learning about my illnesses because they’re afraid of what they might learn…… me, that’s crazy!!! They need to understand what we go through.

    1. I have a long list of chronic invisible physical illnesses, which in turn cause some mental health issues as stated in your post. It’s printed out and I’m ready to provide them with it. I used to constantly tell them it would be helpful for them to learn about my illnesses, but they just wouldn’t take the time to do it. One time I printed out every single illnesses. It was a lot. I set the stack of papers on the coffe table in hopes they would eventually read the material, as I know the huge stack was overwhelming. I am doing everything I can do on my part. I do go to therapy twice every week because I do have a lot to deal with, but I feel I have no support or understanding in my own home with my own family. It’s difficult. Thanks again. Hopefully, this will help. :)

    2. You are always welcome here. Thank goodness for blogs and other sites that can be a support when we need it, right? Do take care xx

  2. Thank you so much for sharing this. I am going to be sharing this with my family members who believe that I am not sick, regardless of the multiple specialists, treatments and procedures I have. Thank you. You are such a Inspiration.

  3. Great tips Christy! It is so true we never know what someone is going through in their lives. When people have invisible illness and pain, they look healthy yet carry a heavy burden. Talk about synchronicity, as I just posted a blog about my journey with chronic pain. xx

  4. HI Christy…
    Chronic pain is a way of life for so many people and yes you are so right with all of your points on dealing with it.
    I have often seen people suffer alone because they are tired of explaining and they slowly withdraw within the small world which has been created for themselves.
    Diet and lifestyle changes are some of the best ways to deal with pain. Today there is a pill for everything, we do need to educate ourselves as the side effects are often far worse than the pain itself.

    Hugs from Alberta

  5. An excellent post, Christy; you’ve captured the feelings of all parties so very well. The best we can achieve is the sense of which you write: Compassion, empathy and a willingness to close the gap of misunderstanding. Nothing works better than understanding and love.

  6. Thanks for this compassionate post, Christy. It hits home because of my daughter (26) having Primary Schlerosing Cholangitis (PSC), an auto immune liver disease. I think you may know about this, but what you said is so true. From the outside, she’s healthy. But on the inside, her bile duct and liver are failing slowly (key word) where she’ll eventually need a liver transplant.
    She was diagnosed six years ago, is a college graduate, working f.t., and her attitude remains positive. You’re right, she doesn’t focus on the disease or want to talk about it, unless symptoms flare up. It’s almost easy to “forget” she has it. We can’t focus on the unknown future too much, though, because thinking of all the possible outcomes is scary. So, we all live life in the here and now. Thanks again. Hugs, Lauren xo

  7. This is a sweet and compassionate post. And one that everyone needs to read because invisible illness can wreak havoc on someone and they can make someone feel worse when they don’t believe them or have an understanding of that invisible suffering. I hope you’re well on this Friday. <3

  8. This made me tear up…it sucks to have someone you love have to deal with this. I hate it.

    “…the only thing you can do is validate their pain” Those words are so key to helping …thank you for sharing this Christy.

  9. Wow, what great points.
    So far in my life, I’ve yet to have someone I care for dearly be diagnosed with an invisible long-term illness. As such, I’m certain that I would not know how to handle it. I think the main thing I would struggle with (because I deal with it in other aspects of my life) is accepting that I wouldn’t be able to cure their pain. I like to solve problems, and I hate the helpless feeling that comes along with knowing there’s nothing I can do.

  10. Great post, I am one of them. I have psoriatic arthritis in the last stages of arthritis in 12 of my vertebrae, in my feet, ankles, knees, elbows and now its’ started in my hips. I’ve had it since I was 8! People look at me and think I am fit, and if I have to catch buses, many times I have had to sit in the aisle, because if I ask to sit down they ignore me. Government agencies treat me harshly, because I am educated, and do not consider my health. I am constantly in chronic pain, and have to rest frequently, and when I am really inflammed I can’t do anything. I don’t like to tell people, as most would not understand and experience has shown that people disappear when you tell them that you have chronic illness, because they suddenly think that I may be a burden on them. I would never do that, I guess illness teaches compassion! :).

  11. Probably we should get to wear large buttons, but since we don’t, it’s good to remember that everyone is going through something. Compassion is a good thing.

  12. Great post and very important points …to be patient and accept an illness and knowing how to adapt life to it is so important..thanks for sharing Christy :-)

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