Life With an Invisible Illness is Hard

Waiting for a baby

Living with an invisible illness (or several as in my case) has been an interesting experience thus far. I’ve been feeling a little overly emotional lately… well, to be honest, more than just a little. Tears have appeared at the oddest moments. I was telling my mother that I wanted to have a salad bar for an upcoming Sunday dinner and started crying as if the idea of having anything else would be the Sunday dinner equivalent of the apocalypse. Sitting with my family, trying to interact despite the fact that pain killers had derailed my train of thought, I suddenly start crying uncontrollably much to my embarrassment. I awoke from a nap the other day crying for no apparent reason other than I just felt like it.

I chalked it up to an increase in the dose of one of my pain meds since the timing coincides. As I’ve reflected further, I find that the emotions are running a little deeper than just a constant drug-induced crying jag. Imagine if you will, waking up everyday after a full night’s sleep feeling even more exhausted and worn out than when you went to bed the night before. Add to that the distinct pleasure of feeling as if you’ve been run over by a freight train, scraped off the tracks with a snow shovel, then re-deposited there only to be struck again by that stupid train, and it is difficult to convince myself to leave my bed. The hardest part of all of this is that it doesn’t go away. It won’t ever go away. Day after day after day this is my new normal. Or as my mom puts it, my new abnormal… because it certainly isn’t normal!

So what do you do when what you anticipate out of life is anything but normal? I believe we all experience times in our lives when the word “normal” is far from the descriptive we’d choose. I think what is happening to me is the comprehension that this is what life is going to be like every day from now until I die. I’ve mentioned that this realization has been slowly coming to the fore. It comes in waves and with each new level of awareness comes the need to acknowledge and accept the next stage of emotional acceptance. I know this all sounds melodramatic and morbid, but it’s the truth. When I started this blog I promised myself I wouldn’t sugar coat things. Much of what I write here is meant to be a record for my posterity, as well as a place at which I can record my thoughts and feelings as I attempt to navigate this season in life.

I am sure that many of my “chronic illness buddies” will understand where I’m at as I attempt to put my feelings into words here. As I was contemplating the emotions that have been so close to the surface I realized a profound truth. I am having a difficult time imagining living like this just one more day let alone the rest of my life. I have purchased the book “Oh, The Places You’ll Go!” by Dr Seuss for each of my boys. My plan is to have all of their school teachers from preschool through high school sign it at the end of the year. When they graduate from high school I’ll present them their signed books. As I was thinking about this project this morning I was shocked when I couldn’t imagine being there when they were graduating high school. It scared me for a moment, how easily I could go there in my mind. I imagined them standing with their father who would give them the book and tell them of the efforts I’d made on their behalf. For the life of me (no pun intended) I did not see myself there. The fact that living each day takes that much effort that I can’t even see past next week scared me half to death (again, no pun intended… well, ok maybe it was this time.) I don’t want to miss out on those things and I’m sure I won’t. The feeling stems more from the fact that living with illness and pain is hard, just plain hard. Imagining myself having to do this for the rest of my life is agonizingly difficult.

Each night as I lay down to sleep I know that at the break of day I’m going to feel even more worn out than I did the day before no matter how much sleep I get. It seems to accumulate and pile up on me. I keep thinking that one of these mornings I’m bound to open my eyes to a new and refreshed me. Alas, it doesn’t happen. Each day seems to me more difficult than the last. If I sound depressed, it is probably because I am. Wheh! There, I said it! Wow, now that I’ve actually put it out there I feel a bit of freedom. I’m usually so good at finding the bright side in life that I feel just a little guilty about being so intensely sad. Certainly there are many people who are suffering similar challenges and even more who face challenges much worse than mine. This is my reality though and I feel just a little better admitting the struggle I’m facing.

I am still trying my utmost best to find the positives, to search for the silver linings. I’ve been knocking at the doors of heaven for strength, guidance, and the ability to accept his will but I must admit that those shiny silver threads are becoming a bit elusive. Just this morning I was looking in the mirror trying to gear myself up to actually dry my hair. Why even bother you ask? Well, because there are a few rituals I like to maintain in an effort to preserve some sense of normalcy and sanity. First, I make my bed, no matter what, because if I don’t the temptation to crawl back in and throw in the towel for the day is too great. Once the bed is made I figure it is too late to back out now and I might as well move on with the day. I don’t shower everyday, don’t judge me, it is just too much effort. However, I do try to do something with my hair, put on a little makeup and get dressed in something other than sweats. On the days that I manage a shower I like to dry my hair, it is exhausting but worth it in the end. My fear is that if I don’t endeavor to do these little things than I might as well give in to the depression that is threatening to overwhelm me.

I’ve been down this road before. Let’s call it the “road to acceptance.” It is a hard road to travel with lots of twists and turns, boulders and large obstacles, and oftentimes I feel like I’m not up to the task of traversing it. The first time I had to travel this road started with endometriosis in high school, then my beloved Julie died, after that during the months leading up to and recovering from my hysterectomy, not to mention the failed adoptions etc… and now this. You’d think that with all that I’ve been through I would have learned a better way to manage this “road.” Actually I have learned one thing. You can’t avoid the emotional roller coaster it takes to accept what is happening. It won’t go away if you ignore it or try to stuff the negative emotions in a place where you think they’re hidden from view. The only way to get through it is to do just that. Go through it, not around it, not over it, not under it, but through it. (I’m sure there is a Dr. Seussism in there somewhere but I’m too tired to figure it out…)

One of the most difficult aspects of having an invisible illness and attempting to ride the coinciding emotional coaster with some grace intact is deciding who to lean on and who is just plain sick of hearing about it. I worry that I’m wearing thin on my loved ones. There are many, who mistakenly think that I will be getting better. They say things like, “I’m sure you’ll be feeling better soon…” Then I sound rude if I respond, “Well, no I won’t be actually.” So I smile and nod wishing so much I could pour my heart out and cry on their shoulders. Or my personal favorite lately, “You look like you’re feeling good….” Um, ok. What am I supposed to look like? Just like anyone else I don’t relish the thought of leaving my house with no makeup and hair askew. Like any girl I still enjoy putting on a cute outfit and at least making an attempt to look all right. It doesn’t mean I feel all right though. Having an invisible illness is tricky. You almost feel guilty for looking like everything is ok… like maybe people will only understand what you are really going through if your hair is greasy, makeup smeared, and clothing rumpled as if you just crawled out of bed.

Then you have those moments when people ask how you are and you wonder to yourself, “Do they want to know the whole nasty truth, the short and sweet, or are they just being polite?” So usually I answer with the socially acceptable, “I’m hangin’ in there…” or, “I’m ok.” I appreciate my friends who really want to know and expressly ask for the long, short, and everything in between of it. Sometimes I just want to vent or I really need to cry. It gives me great anxiety in these situations because I don’t want to be a burden to anyone. I’m sure my friends and especially my family are sick of hearing about it. It is an all-consuming, life altering experience for me and I find it difficult in conversation to talk of anything else. This is another reason I insist on going to school, I need to find someway to “be” outside of myself and these hard experiences.

So there you have it. Not really a very fun or uplifting update. I was going to apologize for my honesty but I promptly erased that sentence and decided that I’m tired of apologizing for the fact that I don’t feel good and I don’t feel good about it. I continue to pray fervently for patience, understanding, and grace. I pray that my children won’t be too damaged by my inability to do the things that I want to with them. I pray to keep my eye on that faint silver lining, I know that if I can keep it within my sights it can only get brighter at this point. I continue to express gratitude to God for my loving and patient family and friends. Most of all I pray that I’ll be able to endure one more day, one more month, and several more years. Someday acceptance will come, I know that. In the mean time if I break down into tears right before your eyes, just please hug me and remind me that I can do this.

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23 thoughts on “Life With an Invisible Illness is Hard

  1. Christina, I have read all of your blog posts and look forward to the next ones. I don’t have a lot to say, other than invisible illnesses are exhausting and painful and hard. They are incredibly misunderstood and the pain from them feels unbearable. It is a constant uphill battle. And from what I have read, you can do it. You can continue your journey. You can touch others in a positive way. Those who you call friends are blessed and lucky.

    • Oh Marie, thank you so much for your kind words and for reading my blog posts. I appreciate the confidence you have in me as well. It really does help to hear these things. Your comment has touched me in just the right spot, I can’t thank you enough!

  2. I feel for you. I know invisible illness– mental illness. But I think your situation is harder. Although you don’t have the stigma of being “a crazie” or that look reserved for the “outsider,” the “untouchables”. But I know people get fed up with people being sick and just don’t get it. I have a few chronic things and am told basically they are my fault by certain people. Even my husband doesn’t get it lots of times. I know you need even more courage than I do to get out of bed and face the day. I am propelled by my husband and once I am up and the bed is made that is it unless I am really feeling ill. Though I think you have it way tougher with all the medical illnesses, having to fight mental illness and physical illness at the same time is very hard. I pray for you. I admire you for sticking it out. I hope somehow, in some way, things can be better for you. A new medication or something. Or a new mental state. You sound like you are on the verge of a good discovery of a new acceptance. But don’t feel badly if you aren’t. I wish you relief from your suffering in some way. xxx ellen

    • Ellen, Your comment tonight is such a great blessing to me! I don’t know if I’d classify my situation as harder than yours, just different. I feel like you understand me in ways that most cannot and so when you comment I know it is coming from a place that I can relate to in many ways. I appreciate you so very much! This is just what I needed to hear tonight, people who have confidence that I can push through this next level and arrive at the acceptance I need to move on. I hope, that like you have touched so many, somehow my experiences can touch others as well. Thank you for your support, your prayers and most of all your friendship! XOXO Stina

      • Dear Stina,

        I am touched by your comment. Yes, I think you can touch others with your story. That’s why I think you should think about a book. Writing is also emotionally therapeutic and can help you as well as others. There are lots of people suffering who cannot voice their pain and you and I have been chosen to do that. Your writing style is great and your posts moving. You are all set.
        I, too, very much appreciate your friendship and, although you do not suffer from mental illness, think our issues are parallel, if not the same. Thank you for appreciating my work and what I am trying to do. xxx ellen

  3. What a great post, Stina. I identified with so many of the things you said. Thank you for putting this out there– you’re right, you don’t need to apologize. I wish I could offer some advice, but I know what you mean about how much of the advice people give in situations like this comes off as totally tone-deaf. Life has taught me the same lesson about needing to go “through” something rather than around it. So I wish you the best of luck; I hope you get “through” it as quickly as possible and that something better is waiting on the other side.

  4. Stinam, Thank you for this post. All to often your post seem to reflex area’s of my life. I am in a teary mood today. I was crying as I read your post. I remember telling my husband in November that I cant do this illness for 5 more years. He was concerned since I am in my early 40’s and this illness of the last 30+ years has no end in sight. It it difficult to explain to people how with the incredible stuggles of daily life the future sometimes seems dark.
    Big ((((((((hugs)))))))))) to you my fellow warrior.

    • Annette, thank you so much for your sweet comment! Not that I want anyone else to suffer, but it is comforting to know that I’m not the only one who faces similar challenges. I was so very touched by your comment today and I appreciate the support! Big hugs back at ya’!

  5. Don’t ever give up the positives and always continue seeking the silver lining! Great Blog. I can relate to every single word!

  6. wow, I could have written much of this. The crying, feeling like you’re wearing thin on loved ones, not comprehending that this is it for the rest of my days… Thank you for your honesty.

  7. aw, girl….
    i needed to read THIS post on THIS day. i’m having a rough time, and it’s been difficult to navigate the crying and the fact that no one can SEE what i’m going through. i don’t wish you had to deal with it too. i don’t wish it on anyone. i’m just glad someone else understands what i am going through. i recently ended up completely sick and in the hospital, and i completely fell apart there. i think i did because it seemed like the appropriate place. being at home, people expect if you look alright, you should act alright. the hospital seemed like the place to fall to pieces. even if i feel like doing that a lot. xxx

    • I too don’t wish this suffering on anyone, but I also take comfort in knowing that I’m not alone. Thank you for sharing your thoughts and emotions with me and for reading my post. I’m so sorry you are hurting and sick as well. It’s funny because I’ve had those same thoughts about the hospital. It seems to be the one place where they understand that just because you look fine doesn’t mean that you are. Isn’t it sad how hard we try to hold it together for those around us because it is too difficult to explain why life is hard even when it seems like everything is ok from the outside? Thanks again for sharing your strength with me!
      xxx
      Stina

  8. You have been through so much! I was reading another post about the spinal taps etc. Oh WOW!! I don’t know how I could handle all that. In this post you perfectly described what it’s like to go to bed and then wake up more tired than ever before. You really do have a way with words. I have definitely felt this way before and I wish it was easier to explain. People think you are just lazy…but it’s not that at all! And it’s funny how many of the websites about Endo and even doctors don’t seem to speak much about the exhaustion aspect of Endo. I wish there was some answer for the energy part because that’s one of the hardest parts because you just don’t want to do anything or go anywhere.

    • I know right?!? I don’t think the doctors really understand or are willing to acknowledge that the constant pain of Endo causes overwhelming exhaustion. It is tiring being in pain all of the time. Thank you so much for reading through my blog. I’m excited to delve into yours as well. As I said in my other comment I have a soft spot reserved for anyone who suffers from Endo. Thanks for the lovely comments!

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