30 little things about my invisible illness you may not know

by Carolyn Thomas  @HeartSisters

It’s Invisible Chronic Illness Awareness Week and this year, the campaign organizers have provided a 30 Things template for bloggers like me.

Most of us look and sound pretty much the way we did before being diagnosed with a chronic and progressive illness that may not be at all visibly obvious to the outside world. This can then make it challenging for those around us to ‘get it’ when we are struggling with debilitating symptoms. So with the hope of helping to expand public awareness into this week and beyond, here goes:   

1. The illness I live with is called: Inoperable Coronary Microvascular Disease

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: I survived a “widow maker” heart attack in May 2008 (which was two weeks after I was originally sent home from the E.R. misdiagnosed with acid reflux – despite presenting with textbook heart attack symptoms like crushing chest pain, nausea, sweating and pain radiating down my left arm). Later emergency treatment finally confirmed a myocardial infarction (heart attack), but debilitating cardiac symptoms continued after I was sent home – and that meant more tests, more hospital procedures, more meds, more treatment – until my microvascular disease diagnosis.

4. The biggest adjustment I’ve had to make is: not being able to continue working in my public relations career due to ongoing cardiac symptoms; for me, this has also meant the demoralizing experience of needing to apply for (and then learn to live on) a disability pension.

5. Most people assume I’m: my same old self. I am not.

6. The hardest part about mornings is: remembering that I can’t go rushing out the door with my hair on fire like I’ve done all my life as one of those insufferably perky morning persons. Early mornings are still my best time of day, though – it’s all downhill from early-afternoon on.

7. My favourite medical TV show ever: What’s not to love about those first few seasons of ER?

8. A gadget I couldn’t live without is: the portable TENS unit that I now clip onto my belt every morning, its little electrode pads taped over my heart to help manage my chest pain. (Also, my laptop!)

9. The hardest part about nights are: never feeling absolutely sure I’ll wake up the next morning. I’m not kidding.

10. Each day, I take: eight pills. (No comment).

11. Regarding alternative treatments, I: am generally skeptical. But I tend to be a tad disillusioned about the state of mainstream medicine, too.

12. If I had to choose between an invisible or visible illness, I would choose: (can’t I pick NEITHER?! Please?)  In 2003, I spent four months sporting a bright purple leg cast after falling off my bicycle. During those months, whenever I hobbled onto the bus with my crutches for my daily commute, fellow passengers used to stand up en masse in a big rush of generosity to offer me their seats. I appreciated the overt message that a bright purple cast signifies about the physical state of the wearer: Handle with care.”  People living with an invisible illness don’t usually wear bright purple casts. Maybe we should.

13. Regarding working and career: I miss my co-workers, I miss walking to work in the morning, I miss my professional colleagues in the public relations community, I miss my wonderful little office at the hospital, I miss working in the field that I was pretty darned good at for three decades, and I mostly miss working really hard all day long yet still having lots of energy to meet friends for drinks or dinner after work – without even missing a beat. I’ve always felt so lucky because I have loved every job I’ve ever had. I’m also struck by how the world now continues to spin nicely on its axis even though I’m no longer able to work on all those Very Important Projects!

14. People would be surprised to know: how exhausted I usually feel behind my pasted-on smile, particularly when around groups of people making chatty small talk. That’s me in the centre of this photo, for example (with my late mother Joan and my daughter Larissa) smiling during my mom’s 80th birthday party celebrations despite being very ill with severe  cardiac symptoms.

Two days before being hospitalized – still smiling!

15. The hardest thing to accept about my new reality has been: learning how to p-a-c-e myself each day; I now label my days as one-outing, two-outing or (rarely) three-outing days, interrupted by requisite naps and quiet rest periods just to recuperate from the last outing.

16. Something I never thought I could do with my illness that I did was: get through the crippling depression that struck me by complete surprise shortly after being discharged from hospital following my heart attack. As cardiac psychologist (and a heart attack survivor himself) Dr. Stephen Parker reminds us: “A heart attack is a deeply wounding event.”  See also: The New Country Called Heart Disease

17. The commercials about my illness: are fear-based (like the controversial “Make Death Wait” ads from The Heart and Stroke Foundation) but I believe they need to be so that women will finally take our #1 killer seriously – which they are not yet doing.

18. Something I really miss doing since I was diagnosed is: staying up late, being among the last to leave a really fun party, hosting my famous charades/potluck dinner parties, doing pretty much anything in the evenings.

19. It was really hard to have to give up: reading fiction – simply can no longer retain enough of the plot from yesterday’s read to have it make any sense to me today. Maddening . . .

20. A new hobby I have taken up since my diagnosis is: jewelry-making, just for fun. Last year, I made myself a special mother-of-the-bride necklace for Larissa’s wedding – including a central pendant made from an embellished 1980 penny (the year she was born).

21. If I could have one day of feeling normal again, I would: grab my coffee mug and take a long solo road trip around our beautiful island in my little green Smart car – without even bringing any nitro spray with me.

22. My illness has taught me: so many things! – mostly about trying not to say YES when I really mean NO (that’s a very valuable lesson to learn!) and also about limiting my very precious time to those who make me feel better, not worse, as much as possible.

23. One thing people say that gets under my skin is:You look great! You must be doing much better now!” I usually want to respond: “Honey, if you only knew . . .” – but I never do.

24. I love it when people: make me laugh!  🙂

25. My favorite motto/quote that gets me through tough times is: “What is, is!” (as the Buddhists say).

26. When someone is diagnosed, I’d like to tell them: It’s really bad now, but you will feel better over time, and that overwhelming fear, exhaustion and anxiety you’re feeling now is PERFECTLY NORMAL.”

27. Something that has surprised me about living with this illness is: how truly unbearable it must be for those who live with even worse pain than I have.

28. The nicest thing someone did for me when I wasn’t feeling well was: too many to count! Oh-so-many truly countless gifts of kindness from my wonderful family and friends! But read this for a list of nice suggestions when somebody you care about is sick. 

29. I’m involved with this year’s Invisible Illness Week because: too many of us don’t have any outward signs that we are suffering at all, and because we may on occasion look and sound “just fine”, others around us tend to be understandably dismissive of our health issues.

30. The fact that you read this list right to the very end makes me feel: Heard. Seen. Hopeful.  Thank you.

This week is National Invisible Chronic Illness Awareness Week.

A version of this post was published here for the 2012 Invisible Illness Week


Q: Are you or somebody you care about living with an invisible illness?


42 thoughts on “30 little things about my invisible illness you may not know

  1. I enjoyed reading this article, but wish there were more of a focus on the children living with chronic illnesses and invisible illnesses…


    1. Kim, this post was a fill-in-the-blank exercise (available here) for individuals to complete. Why not do one for your child? Might be an educational addition to your blog to help increase awareness of children’s invisible illness.


  2. I also have Invisible Illnesses. I’m 32. In the UK and suffer from Intercostal Neuralgia (Nerve Damage in the Ribcage) after having a Benign Breast Lump removed over 4 years ago. I run a Facebook page for other sufferers.

    This has completely changed my life. There is not a moment I am not in pain. I also suffer from Migraines and TMJ Disorder, but it is my Intercostal Neuralgia that has affected me the most.

    Liked by 1 person

    1. Hello Cat – I’m so glad to see that you’ve also done this 30 Things exercise yourself. When I read yours, I was interested to learn that you too use a TENS unit to help manage pain, as I do for coronary microvascular disease pain – an under-appreciated non-drug, non-invasive pain therapy. Hang in there…


  3. Thanks for posting this. Yes, I have more than one invisible illness, Ehlers-Danlos Syndrome (Classic), Multiple Sclerolsis, Postural Orthostatic Tachycardia, Osteoarthritis, and a host of others dx’s. The list fills up a page.

    No one can understand completely what we go through unless that have been through it – which I wouldn’t wish on my worst enemy. There is so much I could say but can’t come up with the words right now.

    Thanks for posting.


  4. Carolyn, as I read your blogs, I find myself nodding in agreement. I have fibro, lupus and severe coronary heart disease. All invisible illnesses. I look good except people say I’m tired all the time. I suffer from extreme depression and some days just wish I could close my eyes forever. I do not have a handicap sticker though I am fully disabled. I was told as long as I can walk I can’t get a sticker – not that I’d use it that much anymore – though some days it would be very helpful (I just don’t go out then).

    After 3 separate bypass surgeries (2 one day and 1 eight months later); brachytherapy; and 7 stents, now my heart rhythms are off. But I try to make do – I find that it is making me question everything about my life – but I keep hanging in there.

    Thank you for being there and offering your wonderful insight and for listening to others rant about their problems when you have enough of your own!


    1. Oh, Valerie. I’m dismayed to read your long list of invisible illnesses. Why do some people seem to have far more than their fair share, and all at the same time?!? Have you read Toni Bernhard‘s wonderful book How To Be Sick? I recommend it.

      You raise yet another important point about these !@#$! handicapped stickers – the misinformed assumptions on the part of those deemed to be judge and jury on deciding who is and who is not deserving of a handicapped sticker! What these idiots (and I’m using that term charitably) utterly fail to grasp is the reality for many with invisible illnesses: that you may have just enough energy to get yourself to the store, do your shopping and return home IF and only if you do it all quickly and efficiently, and don’t take one minute longer than you are capable of managing during a given outing. But throw in a long walk from the car to the store and back – and that simple task addition can push you right over the edge. Those with “healthy privilege” simply do not get that.

      I’ve determined, for example, that I’m able to clean out my fridge to prepare for restocking with fresh veggies, drive to the market to shop, unpack the veggies, prep/load them into the crisper – just NOT ON THE SAME DAY! The first day is spent cleaning out the fridge, the second day shopping, and the third day unpacking the groceries that have spent the night sitting in bags on the kitchen floor while I recuperate.

      Thanks for your kind words about my blog, and good luck to you.

      Liked by 1 person

  5. Handicap parking (reserved spaces) are part of the ADA regulations to ensure access to goods and services. Access from a parking context entails rules about reserved spaces themselves, signage, and routes to/from. In layman’s terms, there needs to be a barrier free means to exit your vehicle and enter a building. The only distance rule is that the reserved spaces must be located on the shortest accessible route of travel from adjacent parking to an accessible entrance.

    Distance however is not the vital part of handicap parking. Barrier free access from getting out of your vehicle to entering the building is. The slope/grade, the access aisle, the surface material, the curb cut, the door handle, etc. Even if a reserved spot was only 3 feet from the building, it wouldn’t be much good if you had to climb a 20 foot ladder, swing on a rope, drop through a window and land on an air mattress to get in.

    Distance is still an important factor and one of the main contentions when it comes to handing out permits. The contentions stem from variable distances each business requires to access their goods and services. A small coffee shop may take only 20 feet, a drug store may take 125 feet, a grocery store 500 feet, a baseball stadium 1000 feet, a large mall 2500 feet, etc. Add to this, the varying distances a person with a disability may be able to cover from day to day, hour to hour. There is no one distance that works for everyone and everywhere.

    The good news is there are many readily available means to assist with distance when barrier free access is provided: Wheelchairs, scooters, walkers, crutches, canes, etc. These mobility devices allow for turning distance into a convenience factor rather than a need. Simply choose the device you need to cover the distance involved.

    Eligibility for a handicap parking permit could then be determined by access aisle. If an access aisle is required to enter/exit your vehicle or transfer to your mobility device, you would qualify for a handicap permit.


    1. Thanks for clarifying, Jack. The sticky point seems to be if you need an access aisle wide enough to exit a vehicle/transfer to a walker/wheelchair, etc. For many heart patients with handicap parking permits who don’t use mobility devices like these, it’s not the access aisle that’s important – it’s the distance they’d have to walk between car and destination. Thus those who have parking permits without visible walkers/wheelchairs/mobility devices get glared at by those who don’t understand invisible illness.


      1. I agree distance is sometimes an issue for them. But there is nothing preventing them from using a mobility device when distance is an issue. This is what I meant by distance becoming a convenience factor rather than a need. Having to use one is inconvenient, but does solve the distance problem.

        A converted lift/ramp equipped vehicle (which can be very expensive) is not required to transport and use a power mobility device. You can get a scooter for example that breaks down and easily fits into a trunk. If a larger wheelchair/scooter is required you can get rear lifts that don’t require modifications to your vehicle. These type users can exit their vehicle, walk to the rear, get there mobility device out, hop on and drive away. Saving all there energy for any tasks they may need to perform once they reach there destination.


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  7. I love your list Carolyn! It certainly does make you think. I love your number 23 — it is maddening when that happens!


  8. Carolyn

    I have read, reread and posted a link to this article.

    It struck a chord with me for 2 reasons. I am now a person with an invisible illness (despite my scar where the BIV-ICD was placed a month ago).* I also have a mother with MS – whose symptoms I did not understand until starting my journey a year ago.

    When first diagnosed. I was in acute heart failure (of course only discovered on my 2nd trip the hospital in as many weeks). Turns out I have dilated cardiomyopathy (on top of a pre-existing Left Bundle Branch, Long QT and PDA).

    When first diagnosed, I was so ill – with a very large clot in my left ventricle – that it was obvious that something was dreadfully wrong. Fast forward a year and I am 1 month on the other side of having a BIV-ICD implanted (yeah, did not have to have a transplant – yet), which is now, in addition to my medications, managing some of my symptoms. However, my ejection fraction remains very low – which of course affects my energy and my mobility etc.

    So – I look better than a year ago, I have enough energy to shower, dry my hair and put makeup on when I go out (with rests each step of the way) and all those folks I meet, who so want me to be “better”, see me and say things like you you reference in your post. They want to see me as better, they see the best I have to give that day, but they don’t see the preamble to getting out the door or the impact that outing has on me for the rest of that day, or for the next 1-2 days after.

    I struggle with responding “Well thanks, it’s amazing what a shower and makeup will do” vs. simply saying thanks and thinking – if only they knew.

    These people often make the comments in front of my two boys (8 & 10) who know in their hearts that Mommy is not nearly the Mommy she used to be. She is nowhere close to being back to normal – they see it all, they know what they miss doing with me, what I can’t do to support their activities and school. They don’t care if I look better that day, they know how much I have to rest after an outing. They get angry sometimes too and want to say – she’s not better. So this invisible illness affects the entire family in so many ways.

    As a child I didn’t get it – I did not understand what my mother was going thru with her “invisible illness” of MS (to us, it was all in her head). Now I get what it’s like to have others not understand, to look at you judging, like you are lazy when you walk in and take a mobility scooter to go around the store etc.

    The heat has become my enemy – like so many have said on your site – and I retreat to the solitude of AC vs. the beach (not b/c I don’t like what I look like in my bathing suit but b/c I can’t spash around with my boys in the water and make summer memories b/c its just too hot).

    I thank you for the article, for the insights and for the confirmation – it is hard for all of us who have an invisible illness and for our loved ones too. We all “get” each other, but those around us – the further removed – the harder it is to see us women just trying to make the best of the cards we are dealt.

    We are not lazy, we are not just out of shape, we struggle thru many days, some better than others, and we can relate to all people with an invisible illness. We may never be that person you once knew, we have a new reality that includes an illness that affects every day of our life, even if you can’t see it.

    * Readers: for definitions of these medical terms, read my glossary.


    1. Kelly, thank you so much for your very eloquent description of what it’s really like to be living with your diagnoses. I was especially moved by your newfound awareness of what your mother must have gone through during her journey. Good luck to all of you.


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  10. I wish my family understood how difficult I find high humidity. I had to slow down after my heart attack (former Type A here), but when the humidity goes up, I end up taking several naps instead of just one.


    1. Very common problem, Suze! Thanks for mentioning that. Extremes of weather at both ends – cold or heat – can also cause debilitating symptoms. I swear that the frozen food aisles at the grocery store make me feel sick…


  11. Wow! You nailed it not only for your particular circumstances but for others with heart disease also. There are days when I just can’t do much after 2pm. I need a rest/nap; docs poo-poo this as nothing serious (not to them it isn’t).

    I still have a branch blockage and anytime I visit a new doc and have an EKG he comes back with a serious look on his face and I know what he is going to say and around and around we go. My last chest x-ray told the latest doc I had an enlarged aorta at the crest. I love what he said “as long as you control your BP you should last another ten years”. Thanks for the encouragement doc. I wish they would think before saying stuff like that.

    I’m on six medications plus vitamins and hormones. I know the meds keep me alive, but it is depressing to have to live by them. I used to be healthy as the proverbial horse and now I’m half the woman I used to be, some days less. Because I haven’t been to the ER lately everyone in my family thinks I’m fine. I’m not and I know it. It is a dilemma to live like this; looking okay, acting okay and not being okay.

    Thanks for your article and the list – it authenticates my feelings to the letter.


    1. Hello Julia – I just cringe when I hear that doctors are still saying things like “…you should last another 10 years”. Sometimes, they simply don’t think before speaking, as you have correctly observed, or they believe that saying this will be somehow motivating. And patients have a sneaky way of proving prognosticators wrong every day. Take care of yourself…


  12. Hi Carolyn

    I came across your blog about 1 month ago and immediately signed up. Today’s blog really is resonating with me.

    Like many who commented on this post as well as you, I too had a LAD MI ( widow maker as it is called) in Nov 2008 at the age of 49. For the past 5 years I have been feeling great, in fact wondering why I kept going to see my cardiologist…

    Until 6 weeks ago when I felt the dreaded similar symptoms of my heart attack. After a very seriously positive stress test, I was expedited for an angiogram only to be told by the cardiologist who performed it that all my arteries were fine (despite a new 40-50% blockage – boy I hate it when they poo-poo a new blockage when you’ve had a major heart attack before). At that time he did not mention anything about coronary artery spams, which is what he wrote in his final report to my own cardiologist… So I now have a brand new “invisible illness” called Coronary Artery Spasms or Prinzmetal’s angina.

    Your post on 30 things to know about invisible illness really touched me because since this past July, I’ve been extremely emotional, naps are now required just about every day, mental and emotional energy pretty much depleted. To know it is normal to feel depressed, be resentful when people tell me “We’re so happy for you that you don’t have blockages” makes me feel better and understood. 🙂

    I must admit that I actually wished they had found a blockage they could stent … At least people would take this more seriously – much like your purple cast. I now am considering closing or at least taking a long sabbatical from my professional practice and obligations just to take care of my own needs, and going back to my practice of mindfulness and meditation.

    Thanks for the great work you do and allowing to share with others who understand.


    1. Welcome Elizabeth and thanks for sharing your story here. You are in very early days yet following your new Dx, so no wonder you are feeling exhausted and overwhelmed as you try to get your brain wrapped around what the heck has just hit you – particularly as is sounds like you were tap dancing through life pretty smugly until July, right? Nothing threatens that fragile confidence in our health like another cardiac event, no matter what it looks like. Prinzmetal’s is an often-missed diagnosis. Hang in there!


  13. I don’t want to be in this club but I am!

    Thank you for this. Not much info out there on MVD! I too survived the widow maker. 99% Blockage in the left descending 😢

    It so sucks because even my family says: “Well, you look okay?”

    I just nod yes and say I am fine but I am so not!


  14. Carolyn,

    I’d like to echo the comment about the (LACK OF) disability parking placards. Having the same disease you have (and that drugs don’t cure, they help you cope), is the unwillingness of my MD to let me have a placard.

    On a good day, I’m OK. She is always pushing the exercise, whether it means I spend the rest of the day on the couch or not. On a bad day, or a HOT day, just getting from the disability parking into the AC of the store can throw me down the rat-hole. A huge price to pay for going to the grocery store. I have no placard, so if I have to get far out in the parking, my symptoms are in full bloom and require nitro, etc. (Remember, 3 nitros and you go the ER, right?)

    Anywho, the DASI score (Duke Activity Score Index) is about if you can go to the bathroom by yourself, or go up stairs, dress yourself. This index does not reflect (WHEN YOU HAVE ISCHEMIA), or the HEAT (WHEN YOU HAVE ISCHEMIA) or the rushing with kids, or to make deadlines (Planes, trains and automobiles), which you have already indicated you cannot do.

    It’s the UNRELIABILITY of our capacities, due to the circumstance, or the weather, or the unique challenges (BIG BOX STORE). The three outing day (gas, grocery, one extra) is a BIG DEAL. And that’s without an abusive or temperamental spouse or a trying teenager or child – or a kid with a problem (ADHD, Aspergers anyone?).

    But the point is, even for those WITHOUT those issues, (or anyone who needs a job to live (EVERYONE?), it’s the little things, like a handicapped placard that can shave off a few points of effort to keep you functional. We can become functional to incapacitated in the blink of an eye.

    Hopefully, enlightenment will rule the day soon.

    xoxo Mary


    1. Thanks so much, Mary. The “unreliability of our capacities” is such a good way to phrase this reality, no matter how we may believe we’ve got it figured out by now. A couple weeks ago, I had a surprise flat tire which (because it happened in mid-afternoon when I ‘should’ have been lying down) pushed me right off the deep end. A pure catastrophe that at one time would have been simply a no-brainer inconvenience for my pre-diagnosis self. You should have seen me: I went from “functional to incapacitated” in record time. *sigh*


  15. A journalist wrote that because of handicap parking placards:
    “[…] Portland (Oregon) lost an estimated $2.4 million in meter revenue last year, and the lack of turnover frustrates store owners, deprives the severely disabled of spaces near their destination and forces drivers to circle blocks in search of a spot.”

    Ka Ching!

    “The Illinois Legislature passed a law that takes effect next year in which free-metered parking will be reserved for only the most severely disabled residents.”

    Portland Commissioner Steve Novick doesn’t have a placard, “though he was born with missing fibula bones and no left hand. The 4-foot-9 commissioner said ensuring open spaces for those with severe mobility problems should be the city’s focus.”

    One woman (with COPD) on the Portland Oregon task force said:
    “[…] you can’t assume people with internal problems are less worthy of a placard than those in wheelchairs.”

    Will she be heard?

    I’m sorry that Mr. Novick has a physical handicap but I would like him to live in MY shoes for a month—– no wheelchair, because I can’t afford one of the snazzy vans that are fitted up for people with wheelchairs.

    I will close this now because I’ve written several sentences that I deleted—- Carolyn might have deleted them anyway (grin) so I leave it to your imaginations what I feel about Mr. Novick and his ‘mobility problems’.


    1. Hello Cave – you’ve brought up such an important point here: many heart patients living with debilitating (but invisible) mobility symptoms report dirty looks (and even nasty comments) directed at them when parking in handicapped parking spots.


  16. This is excellent Carolyn and so much of it applies to living with post-polio as well.

    I love the way you ended it with heard…seen…hopeful, all essential to our well being.

    I would love to do that road trip with you one day! I guess the bottom line is the challenge of being fully cognizant of the joy and opportunity every day brings and living it fully to the best of our ability.


  17. Carolyn,
    Your words made me cry… it is unreal that someone can validate all my feelings and thoughts.

    I do not want any sympathy but simply understanding. I detest that I am so defeated when I want to be so strong and aggressive in all I do… I still try to push, push, push… but I always have to pay… always consequences with angina, fatigue, exhaustion, more nitro.

    Your words make me feel less angry with myself and help me not expect so much of myself. I am so grateful for you writing this post. I wish more people (especially my friends and family) were aware of this.

    I wonder, now, if I wore a purple cast, if others would help me out, like lend me their bus seat or open those heavy doors, etc.??? Maybe you are on to something here! THANK YOU!


    1. Thanks Sharon. You might want to complete this “30 Things” exercise yourself – it’s quite therapeutic actually, whether or not your friends and family read it. And YES I can guarantee from personal experience that wearing a purple leg cast would definitely get others to fall all over themselves trying to help you….


      1. Thank you once again, dear Carolyn. I have been feeling so lousy since the summer humidity and now the dramatic weather change but my doctor thinks I am ‘fixed’ because I had a stent after my heart attack.

        No matter that the right coronary artery is completely blocked, I am aging, I have had thyroid problems for 30 years and fibromyalgia for 50 years! On top of it, I don’t know which things are causing the sense of feeling half sick all the time. The medications are too numerous to separate out to find if any are causing side effects. I can’t differentiate between all of those conditions and none of them are visible!

        A ‘new’ normal? Ha! I don’t remember normal, just a worse normal. I wish I could wear a purple cast…:-(


        1. Whew – you have the double- or triple- or quadruple-whammy going on when it comes to invisible illnesses. I wish you an autumn season of lovely cool breezes and sunny dry days and maybe even a nice purple cast (but removable for showering, unlike my own real purple one…) ♥


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