Chronic Illness and Reliability

I’m not reliable. I’m not present.

I have a chronic illness and have been very very sick in increasing ways the past two years. Last Spring, I was diagnosed with one rare disease, Ehlers-Danlos Syndrome, which is all about joint issues and chronic pain. I have had a chronic cough for 9 months now and it has led to an ER trip and most recently 2 horrible weeks off work due to illness. Doctors are still unsure what to make of this cough as tests keep coming back negative but I keep getting worse and worse and medication is not able to manage the issue. One more attack like last week will land me in the ER and on short term or even long term disability. A person cannot function with a cough that bad along with EDS. I literally dislocate from coughing. I also am at risk of a lot of complications from this cough that are potentially and additionally life threatening.

I’m not reliable because my illnesses are changeable. I could be well one day and unwell the next. Or, as has been the case more these days, unwell one day, but really really unwell the next.

You gain a new normal with this sort of issue. My 100% energy level is probably about 50% for you. My 10 on the pain scale is probably 20 for you. Probably as a result of this, I haven’t gone to the ER when I should. Chronic illness really changes your perspective on things. My reasoning last week was that I *could* walk to the bathroom so I must not be that bad, but in reality, I should have gone to the ER and any other person would have, because they struggled to get to the bathroom. Chronic illness also makes you feel like a bother to doctors as they struggle to diagnose your issues. You can also develop a fear of doctors, because they often treat you as if you are making up symptoms or must not be doing something correctly or are lying or exaggerating your symptoms. Often I get dismissed because of my weight and shamed into not taking my health seriously. Often I get dismissed by specialists because I don’t go into the ER and I make it to my appointments. It’s always always always a Catch 22 experience with chronic illness. Always.

I’m not reliable. I cannot be counted upon. Not in the ways that society defines Reliability and presence are so wrapped up in each other. If you are present at an event that you said you would show up at, you are reliable. I’ve struggled these days with even saying “yes” to anything, including events at my own home. I push for energy on good days. I push through pain and respiratory issues.

My “yes” has changed to “maybe.” Which is a “no” to so many people. An unreliable person. A person who isn’t present.

I deal with a lot of guilt on a daily basis because of this issue. I don’t feel like a present member of my community. I can’t participate in person. Events that have an online aspect rock my world because I know I can do them. I can take part from my home and not have to worry as much, because I can log into the laptop or on my smart phone. But if it includes talking or being present on camera, my enthusiasm differs. I don’t know if my cough will make it difficult to speak or not.

I don’t feel like a good blogger. My concept of good blogging used to be every couple of weeks at least with every week at best. But even with a selfie stick and indoor picture or mirror pictures, just taking pictures in the outfits I make is a lot of work for me these days. I haven’t been here for a month because my energy went toward planning and throwing a birthday party for my husband and then being horribly sick the past few weeks afterwards. I have made things. Several things actually, but I don’t have the energy to share except for a picture on IG here and there.

I don’t feel like a good pattern tester. I have had to drop out due to sickness. I’ve also informed the pattern designers that I tested fit and didn’t have time to thoroughly look over the instructions, but did follow them. I usually try to read through them several times.

I don’t feel like a good friend or a good family member. I miss shows. I miss birthday events. I miss occasions, like baby showers. I send mail more frequently these days, though, but sometimes that is slow to come, too. I may not call to wish you happy birthday, but a text message or FB message is what I can do.

I don’t feel like a good wife. I miss my husbands events. I barely see him on stage. I don’t feel as supportive as I wish I could be.

I am reliable. I am present.

It’s different from what most people want or society deems acceptable.

I live mostly online these days. If I like your post on any social platform, it means I am present. I am here. I care about you. I’m using a precious part of my energy to put it out toward you and say, “hey, I care.”

Most people would think that is nothing, but to me that is everything.

I’m available best by email (contact form), IG direct messages, and Facebook.

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73 thoughts on “Chronic Illness and Reliability

  1. Oh man, I’m with you. Thank you for putting your feelings into writing. Sometimes I don’t even want to talk to people because I feel like I’m misunderstood/judged because I’m ‘unreliable’ and still in my nightgown. Be kind to yourself and know that when you blog I/we love your posts, but I/we don’t look at the calendar to keep track of the time between pots. Try not to misunderstand/judge yourself because your thoughts affect your health both mental and physical. Sometimes getting up to go to the bathroom is a big win, take it as a win!
    By the way, I think you rock!
    Xoxoxoxoxo

    • Definitely being nicer to myself this week and trying to think in new terms. I just realized over the past few weeks that I shouldn’t feel guilty or bad for this sense of reliability that I am excluded from due to chronic illness and disability.

      And yes, sometimes getting up to go to the bathroom is a big win and I should take that as a win. ❀

      I think you rock, too, Judy! xoxoxox

  2. I’m so sorry to hear that you are struggling so hard right now. I wish I lived closer and could help more concretely. Is there anything I can do? Chronic illness is such an asshole. You’re right, people have no idea. I had to fight doctors for years to get them to take Frances’s joint pain seriously.

    I think the two of you would find a lot to talk about if you ever meet in real life.

    I’ll look you up on FB and look forward to connecting more that way.

    I’m planning on being in Toronto on the 24th. If you want to meet up I’d love to see you–if not, I totally understand. And if you would ever be interested in an embroidery lesson, say, for something crafty and textile-based to do that can be done while sitting, let me know.

    • It’s so ridiculous that you had to fight for doctors to take Frances’s joint pain seriously. I’m not sure why doctors have come to question patient honesty. I came across an article recently by an ER doctor warning against lying patients and diagnosing a case as Munchausen after a single meeting with a patient. I’ve read many articles by doctors warning other doctors of this rising issue. Opinion pieces, though, with very little source material and not a single backed study.

      I think Frances and I would also have a bunch to chat about. πŸ™‚

      I’m putting the 24th in my calendar. We’ll chat over FB about where and when.
      An embroidery lesson would be amazing! I really want to learn more, especially the gorgeous thread painting technique you use.

      • That would completely infuriate me. How can effective patient care be based on such a lack of respect for patients?

        Awesome. πŸ™‚ I’ve put it in my calendar too, and we’ll talk more soon.

      • I’m not sure at all. The small comfort I take is that the article is from the US and there are initiatives here in Ontario that are seeking to repair poor and ineffective healthcare for people with rare diseases. They opened two EDS clinics in Toronto for this very reason and are opening more clinics throughout Ontario for other types of rare diseases (just announced on MOHLTC website).

        I know as well since I work in the policy side of the ministry of health and just research way too much that there has been an overall shift in how doctors are being taught bedside manner and patient-centered care. But of course, the shift is slow and filled with a huge amount of bureaucracy. I just hope that as Frances gets older she gets the benefits of the changing system. Which is not to say it is too late for me, but that Frances stands to benefit a lot more given her young age. πŸ™‚

      • I hope so. I’m sure you’ve noticed this too; our health care system is not set up to deal with rare diseases at all, particularly when there are multiple aspects. Frances has a bunch of specialists and they don’t talk to each other at all. If this is part of the culture shift it would be a very good thing.

      • I think they are hoping the clinics help with that communication issue by having several specialists in one location, but I also think that eRecords are going to help more with that. eRecords are still not mandatory, though, and are used even less by specialists and older physicians. But the directives are coming down to make everyone comply, because it leads to better patient care. I also think they are not communicating enough with GPs as the primary care. My GP, for instance, got information from me faster than MOH or the web because of the patient networks I am in… That’s insane.

  3. There is no need to feel guilty. You do the best you can, and that is all anyone can ask of you. As for being a good blogger, heck, I gave up on that years ago. I have two blogs, and a LiveJournal account. On WordPress, I might post once a day, or once a week, or once a month (mostly silly stuff and song lyrics). On my Quilting in Cyberspace, I may post once a month or once a year. Yes, I feel guilty, but then in reality, I set my own rules, and guilt is a negative emotion. If it makes me do something better, fine. Other than that – not worth it, and it takes up valuable energy better used elsewhere. I’m sending you cyberhugs, and lots and lots of good thoughts and love.

    • Thanks so much. Guilt is such a waste of time, but really difficult to get rid of. As for blogging, no one is checking up to make sure I am conforming to a standard. lol. It’s only me that does that. So it’s time for me to let go of that guilt and post when I am physically and mentally able. πŸ™‚

      So many cyberhugs and good thoughts and love to you as well! ❀

      • I have the same issue with blogging. Especially since I don’t have any followers who give me a gentle prod now and then. My own fault, of course.
        Sending cyberhugs, love, and good thoughts for your healing.

  4. Awwww, Andie. So much love. I’m thinking of you and wish I was closer by so I could help out. I really hope the doctors can help you find a path forward soon, though I understand your frustration with that whole situation, I’ve been there myself to a lesser degree. Ugh. Let me know if there is anything I can do you for you (remotely!).

    • You rock, Megan. All I ask is connection. Silly illness makes one feel so disconnected. But, honestly, you do a ton! You’ve always been great at keeping up contact. ❀ ❀

  5. I hope you do manage to get rid of guilt – no-one should feel guilty when they can’t do things because of chronic illness (or any other reason). I hope your cough improves soon. When you post, I read. What a great quote ‘internalizing an exclusionary standard’ – yes, stop if you can.

    • Thanks so much, Anne. ❀ The guilt is slowly going away. Realizing that I was internalizing a standard that didn't even include me in the first place was a huge thing for me. πŸ™‚

  6. My chronic illnesses are much less debilitating than yours, but I think give me a small sense of what you’re dealing with. People really underestimate the psychological toll of being in constant pain and/or being in the dark about what’s happening to your body. It’s grueling, gruelling stuff and I’m so sorry. I like Buddhist thinking on this type of thing, personally: acknowledging the pain and not trying to fight it or attach emotional weight to it. Super hard to do, but we have enough to deal with on the pain and uncertainty front without criticizing ourselves, too. Gentle hugs for you, friend x

    • Thanks so much for that, Jenny. I like that perspective a lot. It’s difficult to not feel guilty but ultimately it isn’t a good use of my time. A few months ago I saw a therapist and chatted about my chronic pain. It all led to the conclusion that I was so well adjusted he didn’t know how to help me. A bit telling when even a therapist can’t see the psychological implications of chronic illness. I guess I’ve done so much self-care that I’m too good at it. Ha!
      Gentle hugs for you too!

  7. Chronic illness is a hard thing to have to live with. What you do is already a lot, and I’m glad you can still sew and enjoy it, even if there’s much less blogging about it now.
    I will not say I hope you get well because it’s rarely that easy, but I do hope the source of that cough can be found and handled

  8. Andie, what a brave and honest email!
    Living with chronic and especially ones that refuse to be diagnosed is hell. Other people’s lack of understanding, belief, compassion just make the daily battle of our lives full on warfare.
    I’ve been feeling bad about not mailing you, because you’ve not been blogging I wanted to say “Hi” but my own
    crap got in the way ~ sorry.
    Just had my 60th birthday, was widowed on my 50th so this wasn’t easy. Have a whole bunch of health issues that are drawing a blank on tests. For example bent fingers with nodules and indescribable pain, Dr convinced arthritis ~ but blood tests come back negative.
    Like you I’m not believed, I’m intelligent, articulate, in a good moment self aware = I must be lying about my severe cognitive issues.
    99.99% of the time I’m in company I’m smiling, asking after others, chatting away. Ok I’m in a wheelchair but I can’t honestly be off the pain scale right? No wrong! It’s my way of coping.
    Andie, you and I and many like us are amazing, loving, courageous people and we’ve got each others backs.
    Like many here I wished we lived nearer to each other I’m sure we’d have a lot of tiny moments of fun. In the meantime please know your a regular in my thoughts. I wish my dear that we could be horses hidden away in a great herd of horses but the sad reality is that we’re not. We 2 are Zebra and we constantly canter* a landscape of pain, * artistic licence here as I don’t know what word there is for a zebra who can’t even hobble.
    I can’t do any social media so I’ll continue to watch for you in my mailbox, and your a great blogger.
    Love Lucy (I’m a very reserved English lass and never, ever say this lightly)

    • I’m sorry things have been rough for you as well. Birthdays like that are tough when they remind you of loss and pain. It’s still important to celebrate yourself and how strong you are. I hope you did that even in a small way.
      I am not sure when doctors decided that patients are lying about their own conditions but I do hope it stops. It really impedes action on serious health issues.
      Don’t feel guilty at all about not emailing me! I know you care either way. ❀❀
      So many gentle hugs to you Lucy! Love you dearly!
      Andie

  9. I’m sorry to read that you’ve been so unwell Andie, and sad that you’re feeling guilty about the consequences of your disease. You didn’t ask for this to happen to you, but sadly guilt doesn’t really listen to logic does it? I hope you’ll feel better soon, and that they can find a reason for that cough they can do something about. Hugs!

    • Thanks so much! ❀❀ Turns out I currently have pneumonia but that might not be the reason for the 9 months of coughing just the recent health decline. But at least it’s something and explains how I’ve been feeling the past few weeks. I’m off work for now to properly recover. Hugs to you as well! ❀❀

  10. I’m glad you are sharing some of your experience with chronic illness, you have a lot of insight and a good story to tell. Obviously I’m not glad you’ve been so unwell!

    Chronic illness just plain sucks. If it’s not shitty enough to be sick and in pain the whole time, you get that terrible layer of emotional baggage on top. As a former exceptionally reliable and punctual person, I hate not being able to commit to anything. You are right, the guilt really gets you down, no matter how hard you try not to feel it.

    Alll I can say is I hope this bad period passes soon, and you return to your version of “normal”. I’ll be here if you need anything – and I’m sure your other internet pals will be too xx

    (PS have you considered submitting this piece to The Mighty? I think it would resonate well there)

    • Thanks, Siobhan. I have considered writing for the Mighty. I think after some editing it might be appropriate. Different audience needs a bit of an edit. We’ll see if I have the energy for that at some point. πŸ˜„
      I finally have a diagnosis for this recent decline. Pneumonia. I’m off work for the next couple of weeks to recover. Trying not to feel guilty about that. Haha. But it’s really best I take the time and don’t get more ill.
      Many hugs to you!

  11. Sending my best wishes to you for a diagnosis as soon as possible and a resolution to your cough. Take good care!

    • Thanks so much. This recent decline turned out to be pneumonia but they aren’t sure that’s the reason for the chronic cough. Hopefully it all goes away with treatment and I can put it behind me. ❀❀

  12. Oh I’m so sorry that you’ve been going through so much, especially recently. I love your posts, and will totally continue following along even if they are less frequent. You bring such joy to the sewing community, so please know that and don’t feel guilty about taking time to care for yourself!

  13. Thank you for posting about this. My fibro is making me hurt more than usual, but I’m trying to push myself a bit to see if I can reach another plateau where exercise doesn’t hurt as much.

    I really hope you feel better soon. Lungs are important, and I think you have a right to push the drs. to help you. Unfortunately that is draining, too. Take good care.

    • Many gentle hugs to you, Heidi. Fibro is tough to deal with. I hope your pain lessens and you can exercise with more ease. Turns out this recent decline was pneumonia but might not be the cause for the chronic cough. All the doctors are hoping that it disappears with treatment of the pneumonia and then my lungs clear up. I hope so. Lungs are important!
      Take care too! ❀❀

  14. Hi Andie, I stumbled upon your blog a while back when I resumed sewing and have been following your antics and costume making for a while. So very sorry to hear life has thrown you a whopper of a curve ball. I’ve sat here for a while writing (and deleting) something inspirational and uplifting but it all sounds a bit weird coming from someone on the other side of the world you don’t even know! I can’t even begin to fathom how you get through the day, you sound like a very strong woman Andie, thank you for sharing and I sincerely hope they can at least sort your cough out soon. Gentle hugs from NZ

    • Thanks so much, Melissa. I really appreciate that. I am glad I am strong and pushing for my own health. If I didn’t push, I wouldn’t have found out I actually have pneumonia right now. I may still have the chronic cough after treatment but at least it’s something. I’m taking the time to rest and recover.
      Hugs back! ❀

  15. Oh Andie I’m so sorry you are going through this! But please know you are not alone. Due to the onset of my husband’s disability we have become very antisocial and unreliable. Sometimes he will pull out of things at the last minute because he just can’t cope with the thought of attending, and I’m fine with that but others aren’t. We have lost friends because we just can’t see them outside the home anymore, or he doesn’t have the energy. I’ve told people to come here but they are never that keen. It’s like they are worried they will catch dystonia or something. Jerks.

    Anyway, know that online is ok. Perfectly ok. I appreciate your likes on IG when I do post which isn’t actually very often these days in fact! I’ll be thinking of you and he you can get some answers soon.

    • Thanks Michelle. I’m sorry that people are treating you and your husband that way. I really think chronic illness separates the good friends from the fake. I hope that people are more kind in the future and come and visit. You have a friend in me and online is a great place for chatting when you are caring for your loved ones. Hugs to you!

    • That’s my exact experience. Thank you for sharing that. When I started having hip issues, it was so difficult to get doctors to listen to me at all and they just attributed it to weight. Of course I am persistent and found new doctors. When your hip dislocates in your sleep, it’s not weight doing that… I wish I had done the same for celiac disease. I don’t have a diagnosis for it but I am gf and have horrible reactions. Doctors told me it couldn’t be that in spite of family history because I was overweight. Meanwhile all my family on my mom’s side is diagnosed as celiac and all are overweight except the young cousins. The just lose weight myth creates more issues than it solves. I cannot stand when people tell me about their illnesses and doctors are dismissing them. Absolutely infuriating. Luckily my current GP isn’t buying into that excuse and wants second opinions whenever the specialists throw that one out.

      • I’m glad you were able to find a doctor who takes your concerns seriously and cares for your actual health over some stereotypes. It’s so important, and honestly shouldn’t be so difficult.

        And you’re welcome. πŸ™‚ It’s a terrible experience to have, but I’m glad people are mobilizing over it (plus The Establishment is a good site and I’m happy to plug them wherever).

      • I’m glad it’s an issue that has come to light in recent years. It has helped me push for better care.
        The Establishment is a good site. 😁

  16. I’m so sorry that you’re unwell – fingers crossed your doctors find a solution. I hope this isn’t overstepping, but reading about your chronic cough made me wonder: is it possible you have mold in your home? I know it can cause chronic respiratory problems, but isn’t necessarily something people think to check for.

    • Thanks Alyssa. There was mold in our basement but it has since been cleared out and the house has filters for the air. There may be some areas that are still unaccounted for but I am not sure. We rent so it’s tough. We can’t go ripping up rugs and such. It’s definitely a concern of mine given that mold was present in the basement.

  17. Dear Andie, I too have a chronic illness which has finally led to me giving up a job which I love dearly. But it has made the difference between me spending almost 2 weeks in every month in hospital, or having a reasonable quality of life. Unfortunately, it does tend to take over your life. You have been missed and I welcome any contribution you can make to the sewing world. Be kind to your self and live as well as you can. Love and hugs to you.

    • Thanks Judy. I do think that working often impedes my health. I’m actually working with my employers to get an accommodation so that I can work from home to preserve energy. They are more than willing to work with me on that. I’m pretty lucky. Much love and many hugs to you. ❀

  18. Oh Andie, you’re one brave lady. I know you’ve been suffering and I so hope that you and your doctors can find you some relief and some answers. I think “maybe” is a good word instead of yes–it acknowledges that you’d like to be a part of everything, but it also gives you the space that you need to step out in this season of your life when it just might literally be too much. I miss seeing what you’re up to, but I understand that you have to take care of your wellness. I hope you have many more spoons to play with soon. Hugs.

    • Thanks Elizabeth. That’s how I am seeing maybe these days. I want to be a part of everything but it’s definitely a matter of how many spoons I have. So I have an answer about the recent sickness and it’s pneumonia. Doctors aren’t sure if that accounts for the chronic cough. I’ll be glad if it does get rid of it though. I’m off work for a couple of weeks more to recover. Hopefully I will start feeling better soon.
      Many hugs to you too!

  19. I’m another voice in the chorus here… my medical issues are not as well controlled lately as they have been in the past, and it’s such a slog trying to explain to the doctor that I want to actually know if there’s anything that can be done, instead of just waiting to see what happens.
    I’ve been trying to portion out my energy all week, since there is a school council meeting that I MUST be at tonight. Luckily my husband steps up and makes dinner and stuff like that, but it sucks that I only have so much energy for ‘tasks related to my kid’, and that since so much of it gets used up in the day to day tasks of keeping the kid alive, when it comes time to just goof around and have fun, I’m already wiped out.

    It’s funny – I’ve never thought of Ehler’s-Danlos as rare: my husband has a fairly mild case, and I know of a bunch of other people who have it in varying degrees. I guess that’s what happens when you hang out with zebras; horses start to look out of the ordinary. πŸ™‚

    • I’m sorry to hear your health isn’t being managed correctly. I find the willingness of doctors to give up when the answer isn’t immediate disturbing. They have a complete lack of understanding how it impacts quality of life.
      I keep hearing that EDS isn’t rare but underdiagnosed. I imagine that is pretty true!

      • The under diagnosis thing for EDS makes sense. My husband got diagnosed in the 1980s – but not by his family doctor, or anyone who dealt with his dislocations. He got lucky that a dermatologist who did travelling visits through northern central Ontario noticed the distinctive scarring he had on his knee. He wasn’t even there for that – he just got lucky and saw a guy who was interested in EDS.

  20. I’m sorry to read about still more health woes, and hope you get answers and relief soon. As far as your posting here, or lack of, try not to feel guilty, all that does is sap even more energy. You have a good reason for not posting – save your energy for things that truly matter. I’ll need to remember to check IG instead.

    It’s nothing new that doctors dismiss women’s complaints, it’s been going on for however long doctors and medical educators were all men. Oh, wait – I guess that would be forever. And now, in the US, doctors are facing the possibility of being scrutinized about how many painkillers (esp. opioid-based) they prescribe, due to the huge increase of heroin overdoses.

    • Thanks Gail. It’s so true that doctors dismiss women’s complaints. There are a lot of studies coming out on that. For women, pain has to be much higher to get action from doctors. I do see small shifts here in Canada toward better care but it’s long overdue and there is so much to fix. The painkiller issue is happening here in Canada too. I haven’t been prescribed anything for pain beyond anti-inflammatory meds due to that. I’m expected to live with my level of pain and work on different methods of relieving it. Meanwhile quality of life decreases because of the pain. Doesn’t make much sense.

  21. Oh dear, that doesn’t sound well. I really hope they find whatever is causing the cough and can help you. We all have our limits and it is not on others to judge us if we reach them. Care for yourself, the ones who love you know you do as you can, don’t blame yourself for not being able to do better. I wish you all the best, as I am sure your family and friends do as well, no matter how many birthdays you miss.
    Hugs from far far away ❀

    • Oh dear, I am so sorry for not replying sooner! I had pneumonia, but post-pneumonia, I still have a bit of a cough. I hope it all goes away. It’s been a tough two months. I’ve been back to work 2 weeks now and am slowly getting back into the swing, but making sure to take care as I am still having troubles with energy after that prolonged illness. ❀ ❀ Thank you for the hugs and sorry it took so long to reply!

  22. I do hope you are feeling somewhat better now. I too live with chronic illness, but I;m retired now and don’t have to deal with work anymore. COPD/CKD3/IDDM all working together to make life interesting!

    • Thanks Denise! I am better now, but still recovering. It’s mostly my energy from being sick for 2 months that has taken me so long to get back. I find myself tired more easily. Slowly getting better with that. I’ve been back to work for 2 weeks now and finding my energy is slowly increasing. I’d love to be retired right now. Work is a lot of energy!

  23. Pingback: I’m Alive!! | Sew Pretty in Pink

  24. Hi Andie! Im Leish & I just found your blog. I so appreciate feeling the guilt associated with not ‘being present’ and saying no to people all the time.
    I have Spondyloarthritis & I am constantly exhausted & in pain.
    It is OK to not go and its OK to say no. I know its easier aid than done, but people who take offence need to get the hell over it! Our lives are harder than their hurt feelings.

  25. Hi Andie. Just wanted to let you know how moving your post is. There’s nothing easy about living with a rare disease .. trying to recreate your life into something resembling fulfilment when so much has been taken away. You’re right that doctors don’t always have the answers (something I struggle with everyday) and that we need to advocate for ourselves. It’s important, though, that we support and encourage each other too. So from one zebra to another .. thank you!!

I love comments, but sometimes I may be slow to respond/approve. I will respond though. :)

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