30 Things About My Invisible Illness You May Not Know

posted in: chronic illness | 9

This is part of my contribution to Invisible Illness Week. What’s that you ask? Click on the graphic at the end of this entry to learn more!

Quanta #1 © 2012 Jane Waterman
Quanta #1 © 2012 Jane Waterman

1. The illness I live with is: A wily combination of things, but it appears that Sjogren’s syndrome and fibromyalgia are a very good fit, as is major depression. I also battled polycystic ovary syndrome (PCOS) and endometriosis for many years until an internal explosion and emergency surgical hysterectomy resolved those issues when I was 42.

2. I was diagnosed with it in the year: 2002 for Sjogren’s and fibromyalgia; 1994 for major depression.

3. But I had symptoms since: 1990 for Sjogren’s; 1988 for major depression, and quite likely before that.

4. The biggest adjustment I’ve had to make is: I don’t know – being a normal person? Not that being normal is any bed of roses, but I had something called my health, and then I lost it in 1990 due to an acute case of food poisoning from which I never recovered.

5. Most people assume: I’m fine because I work hard to appear fine. Although I sometimes want to break loose from this stoic silence and say, “I am having a nervous breakdown!”

6. The hardest part about mornings are: They tend to be any time of the day! I’ve learned as a freelance writer, I tend to work whenever I can, and sleep whenever I can. There are also a lot of grey times in between that I could call resting, but are perhaps best described as short periods of non-restorative comas.

7. My favorite medical TV show is: I used to watch House. Now, I figure, why watch it when I can live it? Sadly, without a psychotic, but sexy, internist…

8. A gadget I couldn’t live without is: Heat pads! And computers! One comforts me in my inner illness world, another in my outer social world. When I combine the two, I’m in nirvana.

9. The hardest part about nights are: Mostly that they aren’t always at night. I don’t sleep as well when there’s light. I probably should be sleeping now. Ah well.

10. Each day I take __ pills & vitamins: Until they develop a soy protein that includes painkillers, anti-depressants and immune supports, I’m probably stuck taking anywhere from 10 to 16 a day – and another 12 a day at the moment for good measure as I am trying an alternative natural treatment for depression.

11. Regarding alternative treatments I: Can’t say I’ve tried them all, but I’ve tried enough to say I’ve earned my stripes. All kinds of massage, supplements, aromatherapy treatments, reiki, and presently acupuncture. As I said to my naturopath last week: I’ve been well and truly punctuated. Really!

12. If I had to choose between an invisible illness or visible I would choose: Let’s face it – each has its drawbacks. Are there people out there who really want to be sick? I don’t think so.

13. Regarding working and career: Due to the aforementioned anything-goes schedule, I had to drop out of grad school and the work force at large. I’m now a hermit telecommuting at random hours to my clients’ servers, and hopefully producing good work for them. 10-15 hours a week is normal for me. 20 hours a week is miraculous, and usually results in my body behaving more oddly than normal, so it’s the exception, not the rule.

14. People would be surprised to know: Despite my survival for over 24 years of illness (not to mention the relatively normal insanity of the 22 years before that) I still think about not being here a lot. Seeing as this would not do anyone any good (I can say that unequivocally as a survivor of several friends’ suicides), I have opted for the nobler goal of trying to work my present despair out with a naturopath’s help. Watch this space.

15. The hardest thing to accept about my new reality has been: The reality is, there’s nothing new about it. This is it, folks.

16. Something I never thought I could do with my illness that I did was: I’d say a back-packing trip around the U.S. in 1996. Despite pneumonia, almost getting lost in the desert in Utah, and sharing a bus with some of the strangest people in America – I had an amazing time. I still long for the day I can go back. America – don’t give up on me yet!

17. The commercials about my illness: Sjogren’s – non-existent. What is that you say? Dry eyes and dry mouth? If you’re lucky. If you get a systemic case like me or Venus Williams (wow, I’m in the same sentence as her!) you get joint pain, fatigue and all kinds of opportunistic infections for starters. As for the depression ads – well, I haven’t really seen that many, but usually when you hear about the risk of mild heart attacks and the like, you realize there really are other causes for depression than genetics or environment, and pharmaceuticals may be one of them. I jest (a little).

18. Something I really miss doing since I was diagnosed is: Probably sex. The rather nasty side effect of most anti-depressants is loss of libido. Toss in joint pain and you might as well hand me the remote (and the heat pad while we’re about it) and watch a good movie. Hopefully one with a little bit but not too much sex. After all, that’s just depressing!

19. It was really hard to have to give up: Sex? Hmmm, I seem to be beating the same path… Okay, then walking – not quite as stimulating, but one of those things that we take for granted. I still walk as much as I can, but it’s a shadow of what I used to do. And yes, I know we walk less as we age, doctor, but really, I’m 46, not 64.

20. A new hobby I have taken up since my diagnosis is: Digital art (computer art). It’s opened a lot of creative doors that shut down as my physical stamina and pain-free times decreased. This entry includes one of my “paintings” using the ArtRage software and my digital pen & tablet.

21. If I could have one day of feeling normal again I would: Oh, I’d like to go backpacking again – see the natural wonders of the world, and the cultural wonders too. A day walking about Paris with friends – what a dream that would be!

22. My illness has taught me: Everyone suffers. I happen to agree with the Buddha on that. We may or may not have visible or invisible illnesses, or life challenges, or someone to complete our sentences, but we all suffer. And when we talk to other people, or get upset about the stupid things they do (intentionally or otherwise) to hurt us, we have to realize that they’re hurting too. And we need to learn to forgive them. And perhaps most of all, forgive ourselves. Give compassion and receive compassion. Give it to yourself if no-one else will. We all need it to feel happier and more peaceful in this world.

23. Want to know a secret? One thing people say that gets under my skin is: crap like, “What you think, you become”, or “Your thoughts determine your reality”. Or some such nonsense. I didn’t wake up one day and said, “Lord knows, I really want to be depressed!” or “Please give me pain, I need it!” After that, “Think positive” rates pretty high on my list of annoying phrases. Please don’t say that. Or if you do, please don’t be surprised when I don’t leap up, embrace you and resolve everything in an orgasmic rush of positive thinking. It’s a little more complicated than that. “No, it isn’t,” you say. Okay, very well. Let’s agree to disagree. I’ll still listen when you come to me years later in the same place I am now. I won’t judge. I promise.

24. But I love it when people: Hug me, show me compassion, and let me know what I’m doing right. I’m like Pavlov’s dog – I’ll positively salivate at positive reinforcement. Positively. Sorry, I couldn’t help it.

25. My favorite motto, scripture, quote that gets me through tough times is: There are so many, but one that seems apropros at this moment is: “We are all in the gutter, but some of us are looking at the stars” – Oscar Wilde

26. When someone is diagnosed I’d like to tell them: The same thing I’d tell them even if they hadn’t been diagnosed, but have been suffering from some unknown symptom or syndrome. “Believe yourself and your experience. If this is new and unexpected, you know it. Don’t let a doctor, or anyone for that matter, tell you that you aren’t going through it. If you’ve known what it means to be healthy, and now you’re not, trust yourself. Get involved in your health care. Research your condition. Don’t make Google your doctor, but don’t be afraid to ask questions based on what you learn. Be an equal partner with your health care provider. Ask for copies of your reports. It’s your health and your life. You not only have the right to be involved, you perhaps have the only pure stake in getting better.”

27. Something that has surprised me about living with an illness is: The whole thing has been a surprise, from the endless vomiting in 1990, to the endless pain in my right abdomen from 2011 on – it’s all been a surprise. Mind you, I’d be happy not being surprised, but life is about surprises, you must admit.

28. The nicest thing someone did for me when I wasn’t feeling well was: The biggest thing that astonishes me, after all this time is that people still like me and shower me with love and affection. Now, admittedly my dear friends might feel differently if they had to live with me, day in and day out, but honestly, it’s nice to have a heart family that doesn’t judge or shower you with “chin ups” or “think positives”. They just take you as you are and commiserate on the rotten days, and celebrate the good days. Perhaps the nicest thing someone did was marry me when I was ill – she deserves a medal of some sort I think. You can’t get luckier than that.

29. I’m involved with Invisible Illness Week because: I’m actually conscious this year when it came around. I’ve long wanted to advocate for folks like me (and folks that weren’t, for that matter), and my blog (https://blackbirdatnight.com) was the start of that. Now I’m actually trying to scrape the energy together to talk to others. There’s a lot of us out there that want to change perceptions. We’re all a bit funny, perhaps a few of us strange (some of us quite strange, I suppose), and I’d say most of us are strong. We’re not slackers. We’re really working as hard as we can to get better. There’s no quick fix, as old-time chronic cases like me can attest, but every little thing we do to get better, and every little bit we do to spread awareness (like telling you not to say things like “think positive”, for instance), is wonderful.

30. The fact that you read this list makes me feel: Cherished! Thank you for reading. I’m heading to bed with an ice pack, a heat pad, and perhaps a remote control. It’s 2:30am here. I finished work at 1am ( 3 hours today!)

Good night, or good morning, whereever you are!

Blessings,

Jane

Invisible Illness? Share your Visible Hope!

9 Responses

  1. Barb
    | Reply

    You have good reason to be proud! I not only read to the end of the list, I truly enjoyed reading it. It is well written (okay, maybe I don't have to tell you that; but seriously, it's so well written, it's a pleasure to read). It's packed full of important information about you and about Invisible Illness, while managing to stay almost light-hearted and accessible to many readers. Okay, that sounds way colder than I wanted it to, but hopefully you'll get what I mean and see it as positive commentary. I love and cherish you and the fact that you choose to share yourself. This piece is worthy of publishing… Not that you haven't been published before… And not that I'm qualified formally to make such a judgement… :) Okay, I think I'd better stop. Writing intelligently is tough after a restless night of sleep and waking. I know, preaching to the choir I am. Love you. Love that you share.

    • Jane
      | Reply

      Thank you, Sweetie – your comment brings me much joy and indeed makes me feel cherished. I so wanted to take part in this, but when I started writing it I thought it might just be too dull and depressing. So I channelled Stephen Fry, and told the facts. I'm so glad it worked.

      You are one of those dear souls I feel so blessed to have in my life. Your loving support means so much to me. I love you even though you used the word 'positive'. ;) It's so difficult to find a suitable replacement for that word!

      Love you too!

      Jane

  2. Carmen Waterman aka
    | Reply

    You are an inspiration and have put this together in a way that adds light to a very hard and difficult reality. It is so important to advocate for those that are suffering and especially when no one else really sees it. You have so much beauty, intelligence and courage and you do make a difference in the lives of many. I am so proud of you and love you so much.

    Believe in yourself, I do and always will. Writing this is so important and sharing it with the world is the kind of open insight that can help to change the world by helping those that so often do not feel they can help themselves.

    • Barb
      | Reply

      Wow, so well said Carmen! We should all be so lucky as to the kind of love and support you two share.

    • Jane
      | Reply

      As the dear lady who deserves a gold medal, there really aren't words to say thank you. I'm certain it's only because of you that I'm still here. Thank you for always showing me such compassion, especially when I can't feel it for myself.

      I love you, for always and for ever.

      Jane

  3. Annette
    | Reply

    Doctors never want to ask about your libido. I say RA has quite a bad effect on it also. Plus the RA often brings Sjogren's as a side effect, but at least that gives us something in common

    My friend has a mental health issue and it has taken her 10 years to get her drugs right.. Now her dad says Just move back home and within 2 years you won't need any medication because your stress will be gone. Needless to say that would never happen

    The National Sjogren's Patient Conference will be held in Toronto in early May 2013. It will be announced on the website https://sjogrenscanada.org/ Just in case you wanted to know this.

    • Jane
      | Reply

      Thanks so much for visiting, Annette, and for your comments – I definitely relate! Thanks also for letting me know about the conference – I haven't travelled in years, but I'm hoping financially and physically being able to do a bit more next year. It would be a dream to go to a conference and network with people who have a common experience.

      Blessings,

      Jane

  4. Annette
    | Reply

    I forgot to say I really like the picture for this post

    • Jane
      | Reply

      Thank you! :)

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