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Why I'll Try to Be Kinder to Myself About My Chronic Illness in 2017

This year, my chronic pain reached new heights, and I was formally diagnosed with multiple chronic illnesses. I spent a substantial amount of time in waiting areas, exam rooms and pharmacies. My illnesses can be limiting, and this year they were more debilitating than ever before.

I’ve spent the better part of the year feeling sorry for myself, judging myself and beating myself up. I haven’t been able to meet my own expectations when it comes to employment or creativity. I constantly worry I’m not living up to society’s expectations by falling short of the norm of the 40-hour work week.

It feels like the whole world is judging me for not being productive enough, not earning enough money and not being independent enough. Even though I know my pain and illnesses are real and incapacitating, I say horrible things to myself every day and berate myself for my inability to live a normal life and do what I imagine the rest of the world is doing with no problem.

I tell myself I’m worthless.

I tell myself I’m useless.

That’s why I only have one New Year’s resolution this year: to stop judging myself for being chronically ill. I want to be kinder to myself and more understanding of my limitations. I want to stop imagining that the world sees me as useless and recognize that I always do the best that I can. I work through my pain every day. I take care of myself. I’m lucky to have support systems that allow me to pursue medical treatment and rest when I need to. And I won’t necessarily feel this way forever.

Although none of my conditions have a set end point, and I’ll likely struggle with them to some extent for the rest of my life, all I can do is be gentle with myself and work as hard as I can. I know it doesn’t help when I tell myself I’m a waste of the world’s time and space. Dwelling on my pain and all the things I can’t do only makes it worse.

I resolve to be more understanding of myself the way that I hope others are understanding of me. Just because I struggle and can’t do everything that healthy people can do doesn’t mean that my life isn’t worthwhile or valuable.

I will continue to seek opportunities that work for me and my body. I won’t push myself too hard just because that’s what’s expected of me. I’ll do everything I can to keep up, to earn money, to be social and to live a happy life. As long as I do those things and as long as I try my best, I’m accomplishing what I need to accomplish.

I resolve to take care of myself and give myself permission not to be perfect, to take breaks and to ask for accommodations when I need them. I will not be embarrassed or ashamed of what I go through, nor will I allow anyone to make me feel like I’m faking or “not really sick.” Including myself.

In 2017, I resolve to be more accepting and patient with myself, even when things get tough or seem hopeless and when it feels like the pain is unfair or will never end. I resolve not to let my illness define me and the way I live my life, but I will also accept when I need to slow down or stop to take care of myself.

It’s a lot to ask, but in 2017, I’m going to try to be kinder to myself about my chronic illness.

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When I Live With the Fear of Rejection Because of Chronic Illness

One of my biggest insecurities in regards to living with chronic illness is the fear of rejection. Most of the time, I’m afraid to talk about my health status because I feel like people will get tired of hearing about it and ultimately stop talking to me. Just how many panic attacks, fibromyalgia flare-ups, stomach aches or chronic fatigue spells do people actually want to hear about?

My point is that opening up about how I’m actually doing and feeling can be a vulnerable and scary process. Just tonight, a friend messaged me on Facebook and told me I looked beautiful and happy in my most recent picture post from Christmas Day. What she doesn’t know is I spent most of Christmas day in serious pain and sleeping, with panic attacks in between naps. After all, chronic illness doesn’t check the calendar; she comes whenever she wants, with or without warning.

I’m working regularly with my therapist on accepting chronic illness as part of my life, understanding that I’m not my body and that these things are neither my fault nor in my control. Even still, I worry constantly that if I share with others how I actually feel, they won’t be able to handle it. I continue to find ways to prove to myself that I’m not broken, flawed or less than, but my inner dialogue is harsh and unforgiving.

Most of the time, it seems easier to lie or at least omit the truth. I say “I’m fine” or “I’m good” automatically and often shift the subject to the other person.

The times where I am received well after finding the courage to share how I’m actually feeling are truly beautiful experiences. I consider each authentic conversation to be a gift. One of my favorite things in the world is when someone asks me how I am doing and then they wait for an answer, without any sort of agenda other than inquiring about my well-being. Those moments help me find the courage to answer more authentically.

Ultimately, I’m seeking to have the self-esteem to be OK with me no matter how other people react to my responses on how I’m doing. I know this won’t happen overnight, but it’s my goal.

In the meantime, I will keep working on overcoming my fears of rejection because of my health challenges. It’s a slow process and one that is important to me.

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Just Because I Have Chronic Illnesses, Doesn’t Mean I've Forgotten You

Each time a healthcare professional asks when I would like to schedule my appointment, I get a punch in the gut. Needing to glance at my calendar does that to me. I wonder how my family and I will be able to afford the co-pays, often realize I’ll have to cancel a lunch date with my best friends and occasionally feel so frustrated and overwhelmed that I consider abandoning doctors and self-care altogether.

Admittedly, I’m still learning how to balance my health care and the rest of what life offers. Right now, I’m seeing how well I do while only making room for two professionals.

Like many with mental and physical conditions, I push my limits, borrow more time and hold out until the morning to see how I feel then, all because I would much rather spend time driving around with my sister or on a date with my husband than be on the phone with my doctor or in bed with a heating pad.

Also, suctioning my stepdaughter Thumbelina’s trach and giving my stepson, Sticky, his baths are more important than finding a moment to take anti-nausea medicine the second I realize I need it. Those things are paramount to the children’s care, and they fill my heart with love and warmth greater than I ever knew existed. I wouldn’t have this any other way.

Such is parenting. Such is loving my family. Such is my paradise.

My intent in saying this isn’t to complain or play martyr. I can’t stand the thought of doing things differently, and, as I said, I’m still learning to achieve balance. Spoonie or not, everyone makes sacrifices and strives to live his or her best life. Each parent and stepparent goes above and beyond to show love to the children in their lives. Loyal friends do their best to show love and keep promises. I don’t want an award or any kind of sympathy for doing what’s currently right for me and mine.

But I do hope to shed light on how hard I try and how hard others like me try. I’d like for the people in my life to know how much I care about them and that I haven’t forgotten.

Coming over to watch a movie and eat popcorn would be the highlight of my week. Running around town to find cotton fields or old buildings to photograph is one of the most exciting things I can imagine. Obviously, doing chores to keep the house beautiful for guests and my family is important to me.

If ever I’m too fatigued or sore to give those things 110 percent, please understand. I love you dearly, and if I could, I’d live the way I used to — tirelessly hurtling through life at the speed of sound with you.

While I’ve had to make room for chronic illnesses in my life, I want you all to know that you are my reason for living.

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The One Chronic Illness Symptom I Wish I Could Get Rid Of

If you were given the opportunity to get rid of just one of your chronic illness symptoms, which would you choose? 

Those who know my situation would probably think I would choose to get rid of the searing pain. Or dizziness. Or the inability to walk more than a few feet. Or the overwhelming sensory sensitivity that makes me feel assaulted by noise, light and smells. And don’t get me wrong, I would love to get rid of all those symptoms, and many others, if I had the choice. 

But the absolute top of my list is a symptom that often isn’t at all obvious to others: cognitive impairment. Even those closest to me, who have to help me deal with its effects, are unable to see the full devastating impact of it. 

Part of the problem, in terms of people being able to “see” the impairment, is that I’m still intelligent, and I can at times be very articulate, especially when I’m running on adrenaline. Plus, I naturally only talk about the things that my brain has been able to come up with, rather than things I have forgotten or am unable to process. So the impairment is all the more hidden, but it’s no less devastating. 

There are times when I can’t walk because my muscles are too weak or are paralyzed, but there are also times when my muscles will work but I can’t walk because I can’t remember how. Or times when I can’t communicate because I can’t translate thoughts into words. Or times when I have to be given detailed step-by-step instructions on how to sit up and get out of bed because I can’t work it out. Or it doesn’t occur to me to eat even though I’m hungry and food is in my line of sight. My brain recognizes the problem but just doesn’t suggest a solution or even think to look for one.  

Mistakes, forgetting simple things and using incorrect words are all common occurrences. I frequently forget my daughter’s date of birth. I even forgot how to spell her name once. I often can’t eat or walk if someone is talking because my brain can’t process both things at once. I’m unable to follow the plots of books and TV shows.

I have no idea exactly how old I am or my husband is. My mom has taken to texting me subtle reminders before my husband’s birthday so that I don’t forget it. I use my phone a lot to remind me what day, date and month it is, but I’m still often confused.

A couple of months ago, I saw something about Easter, so I assumed we were in springtime when actually it was autumn. I often have to get help from my mom over the phone on how to do simple tasks or make simple decisions. My brain can’t be trusted or relied on. 

I hate it. It makes me feel embarrassed, lost, frightened and vulnerable. Having a body that doesn’t work very well is rubbish, horrible and excruciatingly painful. But having a brain that doesn’t work very well makes me feel like my very self is being stripped away. And I think it’s particularly cruel that the disease I have requires careful management of every activity, an assessment of the risks versus benefits and an analysis of the most efficient way of doing it, and yet that same disease also takes away my brain’s ability to do such thinking.

I remember a day a couple of years ago when a doctor was due to visit me at home. I knew in advance that I might not be up to going downstairs so the meeting might have to take place upstairs. But I forgot about this on the day of the appointment and went downstairs. My mom was staying with me at the time, and she could see that I was physically struggling. She said, “We should have had the meeting upstairs.” I replied, “I know, but I forgot to think about it.”  

If I am completely honest, there are some positive sides to cognitive impairment. It can be funny if you make a mistake and can laugh at yourself. I can experience surprises several times over because I don’t remember that I’ve already seen things. The postman delivering something I’ve ordered is always interesting because I have no idea what it might be. Cognitive impairment also stops me dwelling on things like how difficult and depressing my situation is; I am often in a state of blissful ignorance, for which I am thankful. And it has taught me to focus on one thing at a time, so things get my full attention, and I have learned to be kinder to myself and less critical of my mistakes. 

That being said, I still hate the cognitive impairment, and I really wish I could get rid of it. It would enable me to manage all my other symptoms so much better and allow me to think of better solutions to many of the challenges I face. It would stop me feeling so lost, frightened and vulnerable. It would make me feel a bit more like me again. 

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When I Didn't Know How to Move Past the Shattered Pieces of My Health

They talk of people starting their lives over. They need a fresh start. Maybe something tragic has happened and they have to pick up the pieces around them and carry on. But how exactly do they accomplish that? What does it take to look around you, realize some things are simply never going to change and to be OK with that and simply carry on?

I’ve been stuck in a place of wanting to move forward but not knowing how. I am fully aware my life is not going to be what I planned it to be. I had my goals, and I achieved many of them. But then my circumstances changed, my health shattered and since then I’ve been stuck surrounded by those pieces of glass, too afraid that if I moved forward, I would get hurt. Too afraid that the tiny pieces of glass would get stuck forever if I tried to escape them. What does that even mean? I was stagnant. Totally and completely frozen. Stuck in frustration over the wife I felt I couldn’t be, the mommy I struggled to be and the constant longing to be the friend to someone I knew I could be, even if that meant coming to their house just to lie on their couch, but to be there nonetheless.

One day, I realized my surroundings, the home I worked so hard to make a peaceful and healing haven — yes, those very four walls — were closing in on me. I was stuck behind the curtains. It was a wake-up, do-your-best struggle through the day, rinse-and-repeat cycle of surviving. Because of the chronic and endless illness, I put all my energies into surviving, not living. And just surviving was getting draining, it was getting old. So how do you start over when you are not sure where you are starting from? How do you start life over, with your new “normal,” finally accepting that as so? This has been heavy on my mind. As my dark days turned into dark nights, simply surviving was becoming difficult. I had to find a way out of the shattered glass I was surrounded by.

I know I’m not alone. I know someone’s out there reading this, feeling exactly the same way. 

So what now? Where do we go from here?

Make a plan. Think about what you want in life. I mean really think about it. You might not be able to do what you did before, so think about what you can do now. Instead of living in the past of what you planned, wanted, or thought you should be doing, think about what it means to live in the now — taking in what you can do in this moment. Can you get out of your four walls and do even a little bit of what you’ve wanted to? A little bit can be better than none, and that is something I am trying to come to terms with right now. I thought if I couldn’t engage in my volunteer work on a full-time level, the little bit I could do was simply not enough. But the only person it wasn’t enough for was me. The only person in the way of me doing a little bit of what I loved was me. There will always be laundry, chores, errands, bills, and unfortunately it appears there will always be this chronic illness in my present life. So how can I live a life I love within those circumstances? 

Instead of always comparing my healthy life and my healthy goals to what life is now, I needed to make new goals and plans within my present circumstances. Maybe I can’t be the play-date-every-hour-is-planned-out-with-activities mom, the full-time volunteer, the shop-till-you-drop girlfriend or the wife who never has to bail on plans for a date with her husband because she is just too exhausted to function. I had to let those thoughts go once and for all.

Suddenly I realized, instead of trying to find a way out of the shattered glass, I needed to clean it up. Get out the broom and risk a few pieces getting stuck in my feet, because to me that is better than being forever stuck. But it wouldn’t be easy; it would be a slow steady process. But one step forward was better than no steps at all.

There will still be plenty of days that surviving is all we can do. Days the pain is going to hurt so bad, we will still look back to the past and long for what was before. That can’t be avoided, and that is OK. Sometimes our body will trump our mind, it will demand we go back into survival mode to just get to the next day.

But on the days life feels lighter, enjoy it however possible. Live it, breathe it, take it all in. A cup of coffee, a quick trip to your favorite store. Try to find friends who will accept you for you and won’t be wanting more than you can give. It might take time for this to happen. It might take a lot of strength on your part. To put yourself out there again, to figure out who you are again, to realize your maybe not-so-new circumstances may not be going away (for now). But try to grow within them.

Stop hiding your sparkle behind the curtains. 

Let it shine. Let it out.

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Why I Decided to Make My Invisible Illness a Little More Visible

When my lifelong friend, Tracey, texted me this morning at 6 a.m. that she was struggling with depression, I rang her right away. As we talked, our conversation helped me, too.

Her son had called several times and she’d avoided answering. When she finally picked up, he was upset.  “You’re ignoring me!” he’d said, clearly hurt. So she decided to tell him about her illness. And he was finally able to support her.

Now she’s thinking about telling her colleagues and supervisor. But the idea is clearly hard for her because of the stigma and lack of understanding about this invisible illness. Tracey wonders if people will judge her. Will they think she is somehow less of a person? Will they think she is making it up?

Then she told me she was sorry for the period of time that she thought I wasn’t really debilitated with Lyme disease. She thought then that if only I “tried,” I would be able to work and have a good life. With her own challenge, she now gets it. I know my Lyme is mostly invisible. But have I had a role in that? Yes, definitely. Like Tracey answering the phone only when she felt she could be upbeat, I hid my disability.

A few years back when I was housebound, someone organized casserole deliveries for a woman going through breast cancer treatment. There were none for me. Now I see that I should simply have asked.

People can relate to cancer or a broken leg. They see crutches. The impacts of chemo are widely known. But most people don’t understand other disabling illnesses like depression, anxiety and infections from ticks. They don’t really get fibromyalgia or chronic back pain or migraines.

I wish I had done more to educate friends about how truly awful my life was. Had I asked specifically for help, I know they would have given it. I don’t mean asking someone to be a caretaker. But a lunch or bag of groceries every couple of weeks along with company to break the isolation would have made a world of difference. 

But I didn’t ask. I hid.

A friend would offer to come by and I’d say “another day.” I only let people see me when I was able to at least get dressed. The better days were few, so I often declined visits. Or canceled if I suddenly went downhill. Many people gave up and stopped calling. They had no idea I was trapped in bed or on my sofa. Because I didn’t let them in.

I rarely explained how even on a day when I could get dressed, I barely was able to put on my pants and shirt before I had to collapse on the bed. And that was a better day. I should have let them see me at my worst.

As the saying goes, “Seeing is believing.”

But I was afraid to let people know that I was less than whole. Instead, I developed solo coping strategies. Like getting just a few items when I could get to the store, so I could walk less and check out faster. I pushed to take care of myself, sucking energy away from recovery.

I can’t believe that I only started using the electric scooter recently. Before that, I’d even had to leave my basket and flee at times because otherwise I was going to collapse in the checkout line! I wish I’d understood far sooner how liberating and fabulous it feels to ride that red machine. Why was I so proud? How many of us feel this way? 

Sure, some people — maybe a lot of people — won’t get it even if we paint the best picture in the world. But explaining is a start. And letting them see us at our very worst — bedridden or struggling to walk even with a cane or unable to fix a simply bowl of oatmeal — will speak more authentically than any verbal description.

Asking for specific favors, like a meal or an errand or company, makes a world of difference. I know because I’ve finally learned to do it. A lot of people want to help, but just don’t know how.

In this season of renewal, I’m going to continue my newfound openness. And Tracey’s going to show her depression at work instead of trying to disguise it. Even if just one person offers some understanding and help, that’s way better than none. 

Just think: If we can make our invisible illnesses a little more visible, we’ll not only be giving ourselves a great gift this holiday season, we’ll be contributing to a greater understanding for those who come after us. What an wonderful and enduring gift that would be.   

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