The Struggles Of Dealing With A Non-Visible Long-Term Illness

Chronic Illness
Even if someone looks healthy, he or she may have long-term pain that you cannot see. Photo credit: CC BY-SA 3.0 Nick Youngson / Alpha Stock Images.

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 responses of “well they look OK at the moment” or “oh, this must be a good day.” They very seldom realize that as they say this, your loved one may be going through a painful struggle inside. Most people forget that just because someone looks as healthy as they do, it doesn’t mean that that person is not suffering with a chronic illness.

Venus Williams – a Wimbledon tennis champion – has recently been diagnosed with Sjögren’s Syndrome, 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 muttered the words “she doesn’t look sick,” while her immune system due to the Sjögren’s Syndrome was at work damaging healthy parts of her body. Like many chronic illnesses, it works invisibly, and all those who suffer have experienced the frustration of people just 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. It can make it extremely hard for many people to understand, maybe even yourself, how to help a loved one that is dealing with an invisible illness, and to comprehend what they go through daily. You can feel entirely useless while watching your loved one in pain. Here are a few ways to help and support your loved one.

Chronic Illness
Even if someone looks healthy, he or she may have long-term pain that you cannot see. Photo credit: CC BY-SA 3.0 Nick Youngson / Alpha Stock Images.

Take The Time To Learn About The Illness

It is very likely your loved one doesn’t want pity or to be left out of everyday life because you believe they won’t be up to something. It is extremely helpful to you and your loved one to research their illness as much as you can so you can understand what is going on during both their good and bad days. A good day doesn’t mean they feel illness-free; instead, it will just mean they feel slightly more capable, and in less pain than they do on a bad day. Most of all, your research will help you to not treat them differently. They are still the same person, and their illness does not define them. You need to show that you understand that, and love them no matter what.

Accept You Won’t Be Able To Cure Their Pain

This is a tough one. Watching your loved one suffer can be one of the hardest things you will ever have to do, and 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. You, no matter how much you want to be, 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. Let them know you understand why they are not able to do as much as they used to, and why they have days when it is difficult to even get out of bed in the morning. That will mean more to them than any pain killer you could offer them.

Be Patient

It is important to remember you can’t see what is going on inside your loved one. If on one day they are incredibly irritable, then lethargic and quiet another time, it’s important not to become frustrated with the constant changes in their mood. Their illness is not going to stay the same all day, they will have ups and downs, and with those changes, their moods may change quite suddenly and frequently too. It will be helpful for you to understand why they may be reacting in such a way to you, and to know when to give your loved one a little space. Though you want to take care of them as much as possible, they will not want to be smothered the whole time and will want to retain what they have left of their independence. If you are ever unsure whether your loved ones need alone time or a cuddle – it’s OK to ask. They will appreciate the concern and gesture.

Be Selective With 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 you will need to be respectful of your loved one’s wishes. It is a good idea to check with your loved one if it’s OK to share their personal information with your friends or other half, and respect their wishes if for any reason they do not want the information to go any further than you or close family.

Be Vigilant Of Ill Mental Health Signs

Chronic illness very often goes hand in hand with mental health. If you can’t carry out life like you once did, are unable to work, and have quite a few bad days in a row when it comes pain and symptoms of your chronic illness, it can be quite easy to start suffering with depression. It is important to recognize the signs in your loved 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, but should they become a cause of harm to themselves or others it is essential you seek further help for your loved one. If you are extremely affected by the invisible illness and feel like you are having more low days than usual, you may also need to speak to someone or seek help for the way you are feeling. Of course, you will always want to put your loved one first, but at the same time you need to be at your best health in order to look after your loved one and be present when they need you to be. Talking to The Samaritans or a professional therapist could really help you or loved one come to terms with the illness that is not a major part of both of your lives.

As much as this time will be difficult for you, you have to remember it is even more difficult for your loved one. Being patient and trying to understand what they are going through by researching as much as possible are the best things you can do to help your loved one. That, and showing them as much love and support as possible. It will eventually get easier as you both become able to deal with the illness a little bit more, but this takes time, and a lot of understanding on both of your parts.


  1. 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 🙂

  2. 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.

  3. 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! :).

  4. 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.

  5. 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.

  6. 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

  7. 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

  8. 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.

  9. 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

  10. 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

  11. 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.

  12. 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.

      • 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. 🙂

        • 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

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