Portrait of Donna taken from slightly above looking down. She has ombre brown-red hair, wears a red rose headband, purple glasses and a white shirt with horse print. She is looking down and smiling gently.,
A photo taken of Donna in 2015. Would you know that she was ill from looking at her?

Today, I am writing a blog post that I’ve wanted to write for years but couldn’t. Now that my health has fortunately improved— I feel okay writing about certain topics that felt too close or too upsetting before.

The topic for this post is looking well when chronically ill. I am sure you can relate and I welcome your thoughts in the comments, which you’ll find at the bottom of the page.


How Society Views Illness

My life was turned upside down a few years ago when I became severely unwell. Overnight, I found myself unable to return to work and relying on the care of my husband and parents.

Sadly, there are millions of others who have found themselves in the same situation.

Over the years, I’ve come to learn that most of society holds a very black-and-white view of illness.

You are either sick and getting better or you are sick and getting worse. There’s no middle ground.

The Middle Ground & Prejudices

That middle ground is exactly where many people with chronic illnesses such as M.E, Fibromyalgia and chronic Lyme Disease find themselves.

Where one good day– or even a few good days– doesn’t always equate to getting better.

Which leads to prejudices.

If you are well enough to go for a cup of coffee, surely you should be able to do some form of work?

If you are seen to be out and looking well, it can’t really be all that bad?

Wrong.

There is a meme doing the rounds that sums up the prejudices chronically ill people face perfectly. And, it reveals why so many of us feel unnecessary guilt and anxiety.

It reads:

Stay sick and you aren’t trying hard enough,

Make improvement and you were faking all along,

Share your reality and you are attention seeking,

Keep the struggle to yourself and you aren’t really sick.

-Unknown (if you know the original source please contact me)

You Don’t See The Difficult Parts

The truth is that most people aren’t privy to the daily struggle. Unless you are very close to someone who is chronically ill, you will only see a fraction of their lives.

That fraction, naturally, tends to be on the better days. Else, they likely wouldn’t be seeing you.

During those better days, no-one wants to focus on the symptoms they are still experiencing. (Yes, they will still be experiencing symptoms despite how they look!).

I know I didn’t. I was getting a reprieve and I would want to make the most of it.

I wouldn’t mention how I was feeling unless I was asked. Even then, I’d often downplay it because I didn’t want to feel like a fun sponge.

Instead, I’d choose to enjoy myself and I’d look good while doing so! No-one would know by looking at me that I was sick.

The Guilt That Comes With Having Fun

But, with that fun and enjoyment comes guilt. Guilt that would inevitably creep in because of self-doubt.

You see, chronic illness is a cruel beast. There’s often no rhyme or reason for those “better” days.

Every single time I was fortunate to experience one of those better days, those reprieves, I’d question myself.

Especially when they lined up with needing to do something fun, such as celebrating a friend’s birthday.

Maybe I just needed to do more? Was I making myself sicker by resting in bed?

Sometimes external pressures over what others must think would add to this guilt. When you are aware of the prejudices that exist, it is hard not to feel affected by them.

The Dangers Of Thinking THat We Need To Do More

Yet, each time I slipped into this mentality and pushed myself to do more I’d be in for a shock. I’d pretend I was fine for a day and just like everyone else.

And, that’s as long as it would last. A day.

For the next few days I’d be confined to my bed, suffering in a way I wouldn’t wish upon anyone. There is nothing crueller than feeling like you are being punished for trying to live and function like everyone else.

I could never understand why my body would allow me to push hard and be so reckless when this was the outcome.

This subsequent suffering is the part no-one sees.

Why We Push OUrselves When It Hurts OUr Health

Despite this cruelty, I’d do it again, though. Because sometimes my desire to do something outweighed the payback.

Sometimes, I’d get angry about my situation and push myself out of rebellion.

Either way, the alternative would be to shut myself away and do nothing. Which would have been pointless because I wouldn’t feel better from doing so.

If I didn’t have days where I pushed myself to have fun, to do the normal, every day things I wanted to do despite the repercussions I’d inevitably experience…

Well, that wouldn’t be living would it?

We Learn to Adapt & Live As Well As Possible

People with chronic illness don’t choose to be ill but they can choose to learn to adapt and make their way through life as best as they can.

It takes a lot of strength and determination to “look well”. It doesn’t come without its difficulties.

Fibromyalgia, chronic Lyme and M.E etc. are called invisible illnesses for a reason. It means they can be hidden and you don’t necessarily see the symptoms.

However, that doesn’t mean they aren’t there just because you can’t see the signs. Symptoms are always present.

Making An Effort Isn’t Necessarily A Sign of Doing Better

Going to the effort of putting on make-up isn’t necessarily a sign of doing better. It can be for self-confidence to hide the dark circles and dull, pale skin.

That gorgeous, floaty dress that makes someone look so well put together? It could be because it’s the only thing they can tolerate touching their skin as waistbands are far too painful.

AppearaNCES aREN’T eVERYTHING

It’s a ridiculous pre-conception that having a chronic illlness means someone should look like they are ill and suffering.

That if someone laughs or smiles it must mean they are feeling better. Since you clearly can’t be ill and retain a sense of humour (note the sarcasm).

Just because someone made it out for half-an-hour doesn’t mean they are capable of doing so on a regular basis.

It probably took days of rest to prepare for that outing and many days in bed following it.

lET gO oF jUDGEMENT

Instead of judging someone for looking well when chronically ill, maybe appreaciate the difficulties and obstacles they are overcoming to be present.

Empathise with the fact it doesn’t come without payback and that they are likely to feel incredibly unwell afterwards.

Don’t ask if they are ready to go back to work just because they can sit for an hour and drink a cup of tea.

Don’t make any presumptions at all.

Realise that it can make a huge difference to someone’s day to simply know that you understand what they are going through without judgement.

Listen to, believe and respect what someone has to say.

And, appreciate that, until you have lived through it yourself, you will never truly know what it is like to live with chronic illness.


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Author

Hello, I'm Donna. I'm a Scottish artist who lives with chronic illness. My blog began in 2013 as a means for me to share and connect with others living with chronic illness. On my blog, I have shared my journey back to better health and the diagnoses I faced along the way. I now work as an artist and sell my products in my online shop. I continue to write about chronic illness on my blog and also share helpful posts about art, business and bullet journalling.

21 Comments

  1. Wow so true. The you can sit for an hour and have a coffee… when are you going back to work! Brilliant, no one knows I did nothing yesterday to be able to do coffee and that for the next 3 days I will be a pj wearing hermit.
    Thank you.

  2. Anya Grange Reply

    I would like to print out this article or at least copy and paste. Any suggestions?

    • Hi Anya, apologies, I hadn’t thought about anyone wanting to print out my blog posts. I will research into options that allow me to add a printer friendly version of my posts. For now, you should be able to select, copy and then paste into a program such as Word and delete out the images.

  3. Thank you for this. I’ve been feeling extremely ill for four years and, while we’re getting closer to a diagnosis, I’ve experienced the self-doubt and loved ones questioning why I sometimes have energy and other times don’t. I’ve even lost several longtime friends over it. It’s been devastating on so many level, but I also thinks it’s teaching me so many of the things you’ve mentioned: we need to continually pursue healing while adapting to our new normal. I hope people read this and think twice about making comments of invisible illnesses, and that those suffering find a small glimmer of hope in your words. <3

    • I wrote something similar a few years back but have since deleted my WordPress blog. It just got too much for me.
      I remember well how it worked on my wedding day 5 years ago. I looked well on the day, despite being blown up by steroids. I had rested for a week before hand just so I could walk down the aisle. It was touch and go whether I needed my wheelchair, but on the day I managed it. We did have to sit to take our vows though. Just after the ceremony my shoes were discarded and thankfully under a long dress no one knew.
      I fought through pain all day and by our first dance in the evening hubby was actually holding me up. Again, no one could see what was really going on, we get very good at faking being well. What no one saw was the next morning when I couldn’t walk to the bathroom. Hubby had to get me to the toilet and help me wash. I couldn’t walk for the next 10 days and relied on my wheelchair in the house too. What a start to married life! All the guests saw was the blushing bride. I saw a man who truly vowed to stay by me in sickness and health.
      I’m reading back through your Infusio posts as I’m looking at a stem cell transplant now. Even though it’s slightly different (I will need chemo to destroy my immune system completely first then have the transplant) it’s good to read from the patient’s perspective. Drs can’t tell you what you really need to know if they haven’t experienced it first hand. The last few years I’ve been largely housebound as l have developed multiple chemical sensitivity on top of autoimmune. I wear a face mask in public now. Sexy! This is yet another reason why we have invisible illness. We were not seen at our worst. It’s hidden behind closed doors.
      While I’m here, please let me thank you for documenting your Infusio experiences. I’ve found it very reassuring to read and you might well have given me the confidence to try stem cell transplantation. It’s really not a decision to be taken lightly. Donna, I’m so happy for you and your courage. You have given me back something that I lost years ago, hope. Cath xx

      • Nice to hear from you Cath 🙂 I am so sorry you went through this on your wedding day and it’s a great example of how things aren’t always how they seem. As you say, so much is hidden behind closed doors and only those close to us see the true reality.

        I’m glad you found my Infusio posts helpful. I appreciate not all stem cell treatments are the same and we can all respond differently, but I wrote throughout my experience in the hope it may help someone else. I know that reading personal stories really helped me. The recovery after stem cells challenged me in so many ways but I believed I was on the right path and I’m glad to now be on the other side knowing it was worth doing for me. It’s definitely not a magic bullet but it helped to give my body what it needed to get to a point where I am participating more in life again. I still have my health challenges, though I think I can safely say it’s no longer due to Lyme Disease or Fibromyalgia and stem cells definitely helped with that.

    • Hi Esoterica,

      I apologise as I didn’t get a notification for your comment. I am sorry you have been ill for so many years and I hope you do get your answer. I can so empathise with the self-doubt. It is so devastating and I don’t think people appreciate the loss that can be involved.

  4. Thank you for writing this. You’ve described it perfectly. I plan to use this with others who I think MAY want to understand. I long ago gave up trying to make the unwilling or uncaring understand, but for those who are only confused, I am glad to share.

    • Hi Sarah. You’re welcome and I hope you find sharing it useful. I think you are wise to have given up trying to make the unwilling/uncaring people understand. In my experience, it’s wasted energy 🙁

  5. Dan Williams Reply

    Yes, I’m a guy, and yes I have fibromyalgia, and a spinal condition. Thank you for the blog / article. I can totally relate to it, and will be sharing it with others, so that they can better understand me.

    • Hey Dan, glad to hear you can relate to the article. I hope it helps others to understand you better.

  6. Thanks Donna and all the other posts for your candid reponse. This has been a blessing to my heart. I have had fibromyalgia for over 24 years. I cannot even begin to tell you what all I have tried medication wise, natural remedies, high protein/low carb, etc., I also have chronic migraines, chronic sinus infections, hashimotos thyroiditis, IBS , extreme allergies , chronic fatigue , daily headaches , sensitivity to the environment, smells, medications, heat intolerance and very light sleeping. I do not even try to explain to others anymore as it is hard for them to understand – after all, I look fine. On the days I feel good , it is so hard not to “overdo” and then I pay for it. I would like to list what has helped me and hopefully they will help others.

    1) My faith in the Lord Jesus carries me daily as I trust HIM and stay in HIS word and pray.
    2) Keep a journal – this is vital!
    2) This disease has given me a compassion for others that have chronic illness and a different prayer life for others.
    3) Magnesium, Melatonin, D3, Probiotic, Omega 3, Protein Shakes & collagen truly help.
    4) I use Voltaren prescription pain cream and have my husband to rub my back & neck down with this and I use a Bed Buddy that you put in the microwave – this is a moist heat that is wonderful for all aches and pains.
    5) I use lavender essential oil in my bath soaks along with epsom salt.
    6) I get massages – this helps tremendousl y and I so wish insurance would help with these.
    7) I have had to learn to say “No”.
    8) When I need to shut down on a good day after doing several things, I must shut down or I will pay for it tomorrow.
    9) Being in crowds are the hardest of days is excruciating and I try to avoid it.
    10) I cannot listen but so long to depressed , negative individuals as this takes a toil on me emotionally & physically.
    11) I had to learn, “I cannot be all things to all people” even if they do not understand. It’s okay not to answer the phone on hard days!
    12) Getting away (short trips) is wonderful. Long trips are hard and tend to make me stiffer and hurt more.
    13) I have to watch my calendar and not overload it. I cannot plan appointments early in the morning.
    14) I use Extra Strength Tylenol and Flexeril basically. That is about all the meds I can tolerate. The side effects are harder that the disease.
    15) Rest as much as possible so you can be restored as much as possible.
    16) I do think my mother had FMS, but, was misdiagnosed as she hurt all over almost all the time.
    17) Just smile when people don’t understand – it is exhausting to try and explain it to people and so I typically don’t anymore., unless they have it. I just ask them about themselves and try and stay out of the conversation.
    18) I steer clear of caffeine, MSG & sugar as much as possible as these tend to flare me up.
    19) I try to keep moving as much as I can and am working on getting some extra weight off right now as that helps.
    20) When fibrofog is severe, I try not to engage in a lot of conversation outside of my family.
    21) I am blessed to be “hyper” so, that helps, but, even then, I must realize my limitations and energy can fizzle out quickly.

    I hope this helps in some small way. I am praying for each of you! -Pam/Eph. 3:20

    • Hey, Pam. Thank you so much for taking the time to write such a thoughtful and in-depth comment. It’s wonderful to see what has helped you and I can relate to so many of them. I am sure this will be a great help to many who read it!

  7. Donna, Sorry for being so longwinded in previous post. I forgot to add one thing. I am presently on Naltrexone (a compounded med) that is helping me with inflammation with Hashimotos and Fibromyalgia. Have a blessed day and praying for everyone. Love & Prayers, Pam/Eph. 3:20

    • Is this low dose naltrexone Pam? There is some great literature about it and I’ve heard many great things. Unfortunately, my body came out in rashes/itching when I was on it and I was so disappointed I couldn’t take it. So happy to hear it is helping you.

      • Donna, you may have reacted to the fillers in the compounded LDN… worth looking into… or it could be a herxheimer reaction which we have to soldier through before things get better… what about starting with a micro dose and going from there… ask your compounding pharmacy to add NO FILLERS and start very low… worth a try.

        • That’s a good point, Fiona. I’m not sure what was in it other than LDN and water. It definitely wasn’t a herx– it was more an allergic reaction. I’m doing okay without but will keep this in mind for future should I feel I need a helping hand. Thanks!

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  9. Donna,
    Thank you so much for sharing your experiences! Its refreshing to listen to someone who really understands the difficulty of living with chronic illness. I’ve been struggling with chronic Lyme disease, as well as several autoimmune diseases, for the last 13 years, and I can completely relate to the things that you’ve shared. One of my children also struggles with Crohn’s disease as well as Wegener’s granulomatosis, both autoimmune diseases. Its hard enough going through life with a chronic illness while trying to juggle all the ” hats ” we try to wear, trying to maintain the appearance that we are “O.k.” when we’re not….when inside it takes constant effort and Will power to put one foot in front of the other. Its so difficult to watch your child have to do the same thing day after day. It definitely does make us stronger in other ways as we work to fight through these trials. Thank you for sharing your story and giving people hope that there are those out there who truly understand!

    • I am happy to hear you enjoyed the post Mandy. I am sorry you have been struggling with chronic illness for the past 13 years and it must be so difficult seeing your child struggle. We certainly are some of the strongest people I know! So much goes unseen that people simply cannot understand until they’ve experienced it.

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