30 Things About My Invisible Illnesses You May Not Know

I found this blogger survey about invisible illnesses on But You Don’t Look Sick. I thought it would be a different way to share some truths about invisible illnesses and, hopefully, raise awareness for these chronic conditions that many of us suffer with, while looking outwardly healthy.

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Well, you have to make that plural. First rule of thumb with invisible/chronic illness: they never travel alone. I have Ankylosing Spondylitis, Fibromyalgia, Chronic Fatigue Syndrome, Rhinitis, and Depression.

2. I was diagnosed with it in the year: I was diagnosed in 2013.

3. But I had symptoms since: It’s hard to tell when my symptoms started. We’ve speculated that my diagnoses of these illnesses explains weird health issues I had when I was younger and being sick a lot as a kid, but we don’t know for sure. The symptoms I had before my diagnoses started 6-8 months earlier.

4. The biggest adjustment I’ve had to make is: Losing the ability to control most anything, and learning how to say ‘no’ where I need to. I have learned to slow down when my body needs it; I have learned my triggers and how to unwind. And I’ve learned that freaking out and getting upset every. single. time does nothing but cause more pain and anxiety. Sometimes you just don’t get to have all of the answers.

5. Most people assume: that I will just get better. It’s hard to truly understand an invisible illness if you don’t have one. Since the person looks healthy on the outside, they seem healthy to others around them. I often get that look of: “Oh, you’re STILL sick.” Well yeah, that’s what chronic means. I’ll always have this. There is no cure. I’ve come to terms with it, maybe you should too. 🙂

6. The hardest part about mornings are: waking up. It’s very hard for me to get up in the morning because I’m always so exhausted. I usually snooze 3-5 times once my alarm goes off. And it’s a constant battle of planning when I will shower, how early I have to get up, when I will wash my hair, and when I get to have a few extra minutes of sleep. Once I am up, the next battle is an hour or two of stiffness to work through. Pain and stiffness always subside, it’s just about moving through it.

7. My favorite medical TV show is: The one that I watch religiously is Grey’s Anatomy. I’ve watched that show since the beginning and I feel dedicated! Even if it isn’t that good anymore. But the medical TV show that I can relate to the most because of my chronic illnesses is House, of course. It’s interesting to watch the doctors try to diagnose someone. I can relate to the feeling of stumping the doctors, of not being able to get all of the answers to how you’re feeling or what your tests say.

8. A gadget I couldn’t live without is: I would never be able to live without my iPhone, for a number of reasons. First of all, I work in social media, so I’m always connected in some way or another. Second of all, social media, and my WordPress app allow me to stay connected to all of you and to others around the world that are dealing with chronic illness. I am also able to use my phone to pass the time during doctors appointments, tests, and my 4 hour infusions. I can stay up to date with current research, use support groups, or even just distract myself when I need to.

9. The hardest part about nights are: Getting my body to be comfortable and fall asleep. I usually have to take some kind of medicine to go to sleep. This could be because I can’t fall asleep, or most frequently, that I can’t stay asleep. I have to listen to my body and get a large amount of sleep. This doesn’t always match up with what my brain wants to do. But not getting that sleep is a vicious cycle that will ultimately lead to getting very sick and not being functional for anyone.

10. Each day I take 6 pills & vitamins. I get an infusion every 4-6 weeks.

11. Regarding alternative treatments I: I don’t discriminate in treatments or opinions of ideas. I think that anything that will make you feel better and stay healthier is a good plan. I don’t have a problem with modern medicine and I literally could not live without it. But I try to counteract that toxicity with alternative therapy. What works with me is yoga, essential oils, heat therapy, and vitamins.

12. If I had to choose between an invisible illness or visible I would choose: I would choose invisible every time. Though it can be frustrating that people don’t understand, or don’t think I’m really sick, I would hate to see the looks on people’s faces if it was visible. I like to fly under the radar, and my strength and perseverance allow me to do this when I have an invisible illness. I have become good at advocating for myself and I have learned to cherish the days were my illness isn’t as obvious.

13. Regarding working and career: I’m extremely grateful to apply my two passions and actually make a living doing so. I work in health care and social media, what else could I want?! When passion becomes what you’re supposed to do each day, it’s a truly happy professional and personal existence.

14. People would be surprised to know: How much pain I am in on a daily basis. It might be surprising, since my entire life is on social media, that I don’t share the level of pain I’m in every day. It’s always there, sometimes more than other days. Sometimes it’s so bad that it’s everything I can muster to just focus on writing an email at work. And sometimes it’s so low that I want to run around and forget that I actually have these diseases. I’m about 50/50 with those two types of days, but you wouldn’t be able to tell in the slightest.

15. The hardest thing to accept about my new reality has been: Having weaknesses and confronting the unknown. I can’t prepare for a flare, or a sickness, or when I’m going to have a bad day. Not having enough energy to be the person in my head and in my heart is tough. I just hope that others can accept me, the new me, or at least the new parts of me.

16. Something I never thought I could do with my illness that I did was: When I was first diagnosed, I never thought I would become this strong. I never thought I would be able to live a somewhat normal life, still workout, still do the other things I enjoy. I thought I would become irreversibly disabled. And though my illnesses will never be cured or go away, I’ve learned so much about management, reality, and strength. Chronic illness is remarkably humbling.

17. The commercials about my illness: There are no commercials that talk about Ankylosing Spondylitis, Chronic Fatigue Syndrome, or Rhinitis. Though there are occasional commercials about Fibromyalgia and Depression. Overall, the awareness is still a huge work in progress.

18. Something I really miss doing since I was diagnosed is: I probably miss filling my life and my schedule to the brim. I used to love being jam-packed, always on the go, running to the next thing. But now, I need sleep. I need rest. I can’t overwhelm myself. Realistically, the latter is probably healthier.

19. It was really hard to have to give up: Probably the freedom to do whatever I want, stay up all night, fly by the seat of my pants, and not have a worry in the world. I guess, in a way my independence. I’m still extremely independent, strong-willed, and filled with strength. But now I have to consider my health and my illnesses before I do most things. I have to say no. I have to save money and have a cushion for the unexpected crisis because it has proven to occur. It’s okay, but it can be very hard to relinquish that and admit that I need help, or I might be physically weak.

20. A new hobby I have taken up since my diagnosis is: I wouldn’t say it’s a new hobby per se, but blogging has become a fixture in my life since my diagnoses. I’ve always been a writer, and I’ve published a lot, but blogging about chronic illness and becoming a patient advocate/ePatient on social media has completely changed my life. It’s something I might actually be grateful for when it comes to chronic illness. I also take a lot more yoga classes and practice mindfulness–both of which are game changers.

21. If I could have one day of feeling normal again I would: Bask in the idea of no pain and no medications. I don’t think that I would necessarily ‘do’ anything special, I just think I would really cherish the feeling.

22. My illness has taught me: Who is a true friend and part of my family. There is nothing like getting sick to really test your relationships. If you want to see who will stick around, just get diagnosed with chronic illnesses.

23. Want to know a secret? One thing people say that gets under my skin is: The worst statement is when someone goes, ‘Oh yeah, my knee hurts like that,” or “Oh, my grandma has arthritis.” I would hate to ever discount anyone, but having an autoimmune disease that causes a depleted immune system and permanent arthritis damage is quite different than getting arthritis because you’re 85 years old. Like The Spoon Theory author states, “The sentence usually starts with those words and ends with a tale of a broken leg, or a bad back, or a particular horrible flu. Try having them all at once- every day, then tell me you know how I feel.”

24. But I love it when people: I love when people treat me the same. I don’t like to draw attention to myself, and I don’t like to be pitied. There are some people that act like I am very fragile, but guess what. I’m not. Actually, I’m the exact opposite. Other than that, just having the love and support of the people in my life is more than I could even hope for.

25. My favorite motto, scripture, quote that gets me through tough times is: Pain from today is strength for tomorrow.

26. When someone is diagnosed I’d like to tell them: It will be one of the hardest things you’ll ever do; It will feel hopeless sometimes; pain with get to you and make you feel alone; sometimes you’ll want it to all just end and go away; you’ll have to start saying no to people and to things; your life will drastically change; your health will scare you, on a regular basis. But the most important thing is that it will all be okay. You will become the strongest person that you know, and you will become an advocate for your own health and the health of others. You will know what is best for you better than anyone else, and you will build the confidence to stand up for that. Also: you are not alone.

27. Something that has surprised me about living with an illness is: That the medical community is inspiring and that your life can change in an instant. Within some of my online support and chat groups, I see people talk about having to wait 20+ years for a diagnosis, or give up a job they love, or what have you. It’s amazing how far medicine has come to give those of us with chronic illnesses a real chance. There is SO much left to do–but I’m optimistic we can get there. I have to hope for that.

28. The nicest thing someone did for me when I wasn’t feeling well was: This is a tough one. I am unbelievably grateful for my friends and for my family. I would say that my family’s love and support and dedication to research and more is unwavering. I am so blessed to have the parents that I have. I cannot begin to describe what they’ve done for me throughout my life to support me when I’m sick or get me the best treatment possible. My friends are right up there as well. Sitting on the couch with me instead of going out because I don’t feel well; sitting for four hours next to me at my infusions just to keep me company and talk. The list goes on and on. I’m an amazingly lucky person.

29. I’m involved with Invisible Illness Week because: It’s not technically Invisible Illness Week yet, but I wanted to fill this out anyway; so, here is why I think week’s like that are important: To me, awareness is the key goal. Sure a cure would be nice, and I really hope for one in my lifetime; however, what seems more tangible, and more realistic to me is support and spreading awareness. I’ve talked about how important it can be to find other people with chronic illness to talk to, and raising awareness and dedicating health observance weeks and months to these topics make all of us seem just a bit less unique and alone.

30. The fact that you read this list makes me feel: hopeful, grateful, and surrounded by people that care and want to spread awareness.

xo, Chronically Kristin

8 thoughts on “30 Things About My Invisible Illnesses You May Not Know

  1. Thank you for sharing. I too suffer from depression and a few other things. It’s rough, but we have to keep going. It’s definitely nice to know that we’re not alone. 🙂

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  2. Hugs to you, Kristin. My daughter lives with an invisible illness too – Cystic Fibrosis. She wasn’t diagnosed until 15 – after missing her entire freshman year of high school for unknown reasons. Writing this was very brave. I know since getting her illness “under control” my daughter hates for people to know about it and keeps it from all but her closest friends (well, and now your blog readers). One of the hard things for Cystic Fibrosis people is that there are specific infections only they can pass on to each other – so they can never get together and talk about their issues in person or all attend the same fund raiser. I tip my hat to you for sharing and wish you all the best in being able to live your life as best you can within the parameters you’ve been given.

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    • Mike, thank you so much for sharing and for your kind words. I completely understand how your daughter feels. If she ever needs or wants someone to talk to, I’m more than happy to!

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  3. Thanks, Kristin. Maybe it’s a HootAmb thing, but I’m trying to balance the head wants to do this but my body needs sleep. And adding in the “but I could do this last year”.

    I’m still going through the diagnosis and appreciate your honesty. I had to “come out” at work, but not sure how much people will know. Point 26 was especially helpful.

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    • You’re welcome! It’s a constant and ever changing journey. I “come out” on a daily basis it seems. And it’s always a gamble, but it’s always worth it.

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  4. Hi Kristin, first of all I ask for excuses for my bad english; I am brasilian.

    It has been a hopeful gift finding people through “myinvisiblefight” campaing, because, as usual in Invisible Illnesses, one thing I claim about is the isolation it causes, not just because of the symptoms but the misunderstanding associated to them.

    I get really identified with the point 5 of your post. I am tired for repeating that I am not better, and for explaining what my disease is, the unclear diagnostic and that it´s not just a pain on my feets anymore, as the problem started, but a systemic syndrom.

    My difficulty about getting up in the morning used to be the fatigue, but now, along with that, I have a discouragement by a deep weariness of years and years of suffering without a truce. About nights, like you said, my brain “doesn´t match” my body demands, and I am loosing the very natural abbility to fall asleep…

    About the point 23, I tottaly think the same! Hearing “do you think your disease is the worst in the world???”, or when a person very older than me say “Look! I have this bursitis!”. But worst of all, was hearing “What people have to do with your pain”???

    I believe there are many things I wouldn´t know if I didn´t get sick, I am a better person in so many ways now.

    Something I learn is to be there supporting people when they need, because by helping others I can “forget” my pain. I am almost believing there is a natural system in taking care through wich we get better by helping people who have the same problems we have….

    Thank you very much!

    Daniela

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    • Daniela,

      Thank you so much for your comment and sharing your story as well. We’re a very supportive tribe, and if we have to fight these horrible diseases–at least we get to fight them together! 🙂

      Kristin

      Liked by 1 person

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