illustration of a woman sitting on a swing under a tree in autumn

Accepting There May Never Be Recovery With Chronic Illness


Recovery is a interesting word. What does it even mean? Does it mean you are cured for good, or is it an ongoing process? The dictionary defines it in the following two descriptions:

1. a return to a normal state of health, mind, or strength

2. the action or process of regaining possession or control of something stolen or lost

The second definition caught my eye.

“Regaining possession of something stolen or lost.”

In life there are times when we experience losses. Losses sometimes of great value. Losses one may question if they can ever get back. Losses one may question if they will ever truly really recover from.

Can a chronically ill person ever regain possession of the health that was stolen or lost from them?

Can an adult ever gain possession of innocence they lost at a young age due to childhood trauma?

Can a person ever recover from losing the love of their life? Whoever that was, can they feel whole again?

Can someone who feels broken ever really be fixed? Or will they always be slightly “broken” in one hidden way or another?

That’s a question swirling in my head these days.

I don’t want to be “broken” anymore. Not that I ever wanted to be broken in the first place. But how I wish I could close my eyes and open them and have everything suddenly be all better. I wish I could pretend everything away. Trust me, I’ve been trying super hard to forget I am sick. I push my body further than it is meant to go; I think I won’t feel the consequences because there won’t be any. I think I can talk my body out of being sick. I tell it I am going to act as if I am not sick. I tell myself  I am going to live the life of a healthy person. I’ve found myself stuck on this carousel that won’t let me off. I feel like an old school VCR stuck on fast-forward mode and I am waiting to hit the end. What happens next, I’m not really sure – but I feel as if I am catapulting towards it quickly and I’m a bit worried, to be honest.

But then I ask myself – if one thing hadn’t led to another and I wasn’t sick today, would I really be who I am now? Would I be able to understand when people are hurting and spot it from a mile away? Would I want to help others the way I do? Would I even be me? Sometimes though, I wonder who that even is.

I’m a blur of struggling to not fall off the edge and positively fighting the negativity.

So what does recovery really mean then? Does it mean going back to the person one used to be? So the next question would be, do I even want to? My eyes are so brightly opened now to life as it truly is. There are no rose-colored glasses here. There’s the truth as it exists. For some people, one day they wake up and are forever changed. There is no going back and for many that is a difficult pill to swallow. And I see that. I see it and I feel their pain. I watch as they transition through the various stages of grief. I watch as they experience loved ones judging and questioning their battle.
The saying that you can’t understand what a person is going through until you walk a mile in their shoes is 100 percent correct. Everything we think is based on our one-sided perspective.

So how could families or friends understand an illness that refuses to go away? After all, they had a cold, they went to the doctor, the doctor gave them a pill and they got better. They recovered. But their ability to recover from a common illness might limit their compassion, empathy or simply understanding when it comes to chronic illness. Why can’t their friend or family member get better? Thoughts slip in like “They must be bored or want the attention,” “They’re a hypochondriac” or “They spend too much time on the internet playing doctor with Google.”

So in an effort to prove to everyone that despite illness you are still worthy, still deserving of acceptance and understanding, you may travel down a dangerous road of proving this to yourself and to your loved ones. A never-ending push to be enough, to get it all done, to not let anyone down. Walk through the store with those body aches, go to work and maybe secretly cry through the longest ever shift, watch your children sing and dance to yet another song because going to bed and taking your pills can wait.

You don’t want to disappoint, you don’t want to be the reason they are let down, again. You don’t want to be the reason your family is held back for one reason or another. But in the end, sometimes you are and you will be. Maybe there might not be recovery.

The final stage of grief is acceptance.

Maybe you will be ill until further notice. Maybe you feel “broken.” But don’t let it define you, whether by fighting it or giving up to it. Accepting it is just that. You take the illness as it comes and enjoy it while it is gone. Don’t let it harm you by trying to prove it wrong and don’t stop living and dreaming your dreams because you have this new part of you.

But getting there is easier said than done. It won’t happen overnight. As I write these very words I have them on repeat in my mind. Some days will be darker than others and some days you’ll think you have finally accepted your circumstances totally. So take one day at a time. One hour at a time if you need to.

Breathe, close your eyes and breathe again.

You’ll get there. We will get there.

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Thinkstock photo via Grandfailure.

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Why I Believe 'Radical Acceptance' Is Important With Chronic Illness


It’s time for some serious talk. This is going to be a topic that will likely be controversial among this community of people because we all have widely varying opinions, but I am going to step up on my soapbox and give y’all my two cents. Acceptance of our conditions and struggles is critical in being able to live a life coexisting with chronic conditions. Why is acceptance critical for existence when you are faced with chronic conditions?

First, I want to tell you my definition of what acceptance is – more specifically, what radical acceptance is. Acceptance is basically acknowledging where you are, what you’re doing in the moment and being OK with it. Not judging it or yourself. Just acknowledging it. Simple as that.

Radical acceptance is very similar, but it is acknowledging who you are, where you are, what you’re doing in the present moment and you accept it with you heart, mind and soul. This is me and my journey with chronic illness and acceptance:

I have been diagnosed with a chronic condition that will likely affect me my entire life. I have simple, daily tasks I struggle with every day. But this is my life, and I am at a point where I am OK with the hand of cards I’ve been dealt.

My life may not be ideal, nor will it ever be what I had once expected, but I have learned a lot and it has shaped me to become more than I would have ever thought. It has brought me new friends, a chance to come across and begin writing for this wonderful site and overall it has given me a new perspective on life!

This is radical acceptance. I know who and where I am in life in this present moment, and I accept it with my entire being. I also accept my past and how it has shaped me into the person I am today. For a long time I struggled with trying to justify why I was going through what I did, but acceptance has allowed me to just take my life as it is and find new ways to be “successful” in it.

My life is far from easy, and my road to recovery is just beginning, but I am OK with this because I have learned radical acceptance, and I am able to live my life with what it is.

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Thinkstock photo via Poike.

20 things people with chronic illness want to tell their friends, but don't

20 Things People With Chronic Illness Want to Tell Their Friends, but Don't


When you are diagnosed with a chronic illness, you might meet and instantly bond with other spoonies who understand what you’re going through. But what about all your healthy friends? When one person’s lifestyle changes due to illness, it can become more difficult to relate to each other or even stay in touch. You might spend your days at home in pajamas while they’re constantly out and about. How do you maintain a meaningful connection?

For those who are healthy, it’s often hard to really “get” what your chronically ill friend is going through if you haven’t been there yourself. And being sick can cause us to worry about being a burden and bringing other people down – so we don’t always speak up about what’s bothering us, physically or emotionally. In order to start breaking down this communication barrier, we asked our community to share what they want to tell their friends about living with a chronic condition, but don’t. Let’s help others better understand what it’s like to be sick.

Here’s what the community told us:

1. “I feel lonely a lot. It’s very isolating being sick and in pain all the time. I’d give anything for you to just stop by with dinner and a movie or a board game so I wasn’t alone with myself.”

2. “Please keep inviting me out, no matter how often I can’t make it. It can make my day just knowing you thought of me and want to spend time with me, even if it isn’t always possible.”

3. “I mostly wish they would remember I’m a person. I need friends, someone to talk to, someone to be silly with, someone to hang out with. Someone who won’t make empty promises.”

4. “That it’s more than just the physical symptoms. That it caused me to leave my job and put me in a horrible financial situation. That the guilt I feel is overwhelming since my husband and I can barely pay our bills. The mental side of chronic illness can be just as difficult.”

5. “I miss the way things used to be, like it was before I got sick. I’m still me. You’re still you. Why should our friendship change just because I’m sick?”

6. “I wish you would learn about my diseases and illnesses, and understand they aren’t going to go away. I’m not going to ‘get better.’ I can only handle my illnesses as best I can.”

7. “I tell most things to my closest friends, but I really try to downplay the level of pain even though they know it’s bad. I couldn’t imagine having the ones I love the most (friends and family) know the true extent of what I feel. No one should have to feel what I feel and the idea that my loved ones even have to know I have pain at all is hard for me.”

8. “You don’t mean to make me feel guilty, but you do every time I hear how disappointed you are when I have to cancel our plans last minute for the umpteenth time. I constantly feel like the bad friend, and I’m so lonely. I miss being the me I was before my illness, but I’m still a good person!”

9. “Keeping up with you intimidates me. I love you and value you, but I’m afraid to hold you back.”

10. “That I’m really, really scared because of it. I’m scared of what my illnesses are doing to my body, of what they could do to my body, of what my future will look like, of losing my friends if I admit how scared I am and if I admit how much more help I need than I ask for.”

11. “Just because I can’t physically spend time with you doesn’t mean that I don’t need you. Just one text message can brighten my whole day.”

12. “I wish you would just ask me what it feels like to be me. Ask what it’s like living my life in pain and exhaustion day after day after day. I wish you would care enough to ask me to explain what I go through, rather than judge me for canceling plans or for being slow to commit to plans.”

13. “Please don’t assume that just because I am up and walking around means I am fine. It probably just means I have things to do regardless of the pain.”

14. “That while I know they think it’s funny to make fun of people who have to run to the bathroom all the time, it really isn’t that funny to me. It’s hard to feel like you fit in when everyone is laughing at a problem you face daily.”

15. “When a friend says, ‘You know you only have to ask for money,’ they don’t realize they’ve set up a power struggle that reinforces my feelings of the illness victimizing me. It makes me an outsider: me vs. them. My friends love me, I know that. They know I can’t work regularly, that I use the food banks, that I don’t own a car or go on vacations. But somehow they can’t internalize the relative poverty I live in. If they feel led to, just surprise me once in a while with a gift. That would make me feel much more like a peer and better understood.”

16. “I’m sorry I’ve been so distant. I’m sorry I constantly change or cancel plans. I don’t mean to be ‘flaky’ or seem like a bad friend. I’m just trying to get through each day.”

17. “I’m very scared you’ll leave when you discover the severity of my illness. We’re very young, and I understand you may not be ready to have someone this sick in your life.”

18. “I may be sick most of the time, but that doesn’t mean all of the time. Not being invited to things is worse than not being able to go.”

19. “Please talk to me about more than my illness. It has consumed my life, but that doesn’t mean I don’t want to talk about anything else. I still like to talk about how you’re doing and that funny video on Facebook. It’s a relief when someone can talk to me about ‘normal’ things.”

20. “I wish you would remember I do need your help. I can’t always be independent anymore. Please don’t act like they don’t exist. I’m still learning to accept my weaknesses. I need your support.”

What’s something you want to tell your friends, but don’t? Share in the comments below.

two friends lying in the grass and smiling

5 Things to Know About Supporting Your Chronically Ill Friend


The diagnosis of a chronic illness can be difficult for many to grasp. The concept that the person isn’t getting “better” in the next few days or weeks is foreign to many, particularly young people. The classic condolences, “Feel better soon” or “I hope you get better soon” don’t seem to do justice to the enormity of what lies ahead.

Remember, looks can be deceiving. A bit of make-up and a smile can cover a world of pain hidden inside. Beware of the comment “you don’t look sick.” Often it can invalidate the struggle hidden inside.

Instead, take the time to really listen. To ask questions and show you genuinely want to understand what their body is experiencing. Ask them how it impacts a typical day. You don’t need to be a medical expert or have a clue what the acronyms, tests and treatments all mean. Just showing an interest will be incredibly validating.

You may feel way out of your depth, confronted by the dramatic change in your friend. It may be harder to connect to them as their experience is now so different than your own.

Here are five key points I think your friend with chronic illness would love you to know:

1. They might feel like a burden.

Due to the chronic, unknown nature of the illness, they might wonder if/when you will eventually give up on them. They might be terrified that you will get “sick of them being sick.” Consequently, reaching out for support, prayer, etc. can be exceptionally challenging. You can help with this. Simply taking a few seconds out of your busy schedule to send a “How are you honestly feeling today?” message can make the world of difference. To your friend stuck in bed, battling incredible pain or vomiting in the bathroom, your message will be a reminder that they aren’t alone. A glimpse of light in the darkness. It will mean the world that you took that time not only to think of how they were doing, but to act on that thought. (I am in tears writing this because I know just how powerful this act of kindness can be.)

2. They are still the same person as before the illness.

Chronic illness presents a challenge to the dynamics of relationships. Your friend may not be able to go out like they used to and their personality may be altered. However, despite the external changes to their circumstances, underneath they are still the same. They still value the relationship incredibly (actually more now), they love you and they care about you and what’s going on in your life. You don’t need to walk on egg shells around them or keep your struggles from them as a way of protecting them. I think you will find that your friend has become a great listener and more empathetic than they were previously. They will likely delight in you sharing your life with them – it’s like tasting a piece of normality. Chat with them normally, like you would any other friend.

3. Communication is key.

You may have your own emotions about your friend being sick. You may find it really hard to watch them crying in pain or struggling to walk. Perhaps you are unsure whether to still invite them to events. Please don’t avoid what is uncomfortable. You can talk to your friend about how you feel and have a discussion regarding the impact of the illness on your relationship. Communicating how you feel is by far better than silence or distance. If you are going through a rough period or are too busy to keep in contact, communicate that. Your friend will almost certainly appreciate you addressing where you are at and feel relieved you’re willing to approach the “elephant in the room.”

4. 
Your friend doesn’t expect you to “fix” them.

Perhaps one of the hardest parts of the illness for you is feeling powerless to do anything about its existence. Perhaps you are the kind of person who likes to offer a solution to people’s problems and cross oceans to heal their pain. It can therefore be hard to accept that there isn’t anything you can “do” to change this situation. Feelings of guilt may arise – guilt that they are struggling so much while your life remains relatively unchanged. The situation may seem unfair to you. Perhaps this is the origin of the condolence “I’m sorry” – I know I have used that one many times before. Again, the greatest help you can give your friend while feeling this way to be present. Either through phone calls, a message or showing up at their house (whatever is easiest for you). Walk with them through the hurt, fear and grief. Actively listen. Please don’t avoid them because of that uncomfortable feeling of guilt – I assure you, it’s not your fault.

5. Stick around. Be consistent. Be faithful.

After a while the flowers will droop, the shock of the initial diagnoses and dramatic life change for your friend will wear off. That person however, will still be struggling, likely with the same kind of pain they were in at the beginning. But the greatest thing you can possibly do in this period – in the weeks, months, years following – is to simply show up. To check in. To be there. Be there to celebrate the moments of victory and also be prepared for the valleys.

Friend, I thank you for being there for my fellow chronic illness warrior. We appreciate you immensely. In fact, tears are building in my eyes as I reflect just how far a little bit of kindness can reach. Never underestimate your impact on their life. How your presence, your smile and support influence their world.

We were never meant to walk this journey of life alone.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via william87.

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Dear Doctors: All I Ask Is for Someone to Believe Me


To the doctors who doubt me,

I know I’m not the only patient you will see today. I know I’m just another name in a long list of people you look after. I know I might mean little to you and the only reason we came in contact is by fate, because you supposedly are one of the few people who are able to help me. I am conscious of your life being busy and I understand you don’t have all the time in the world to look after just me. I realize my problems aren’t an immediate “life or death” issue and that you probably see people in much more critical condition than I am in.

But what I also know is that you are more than just a name to me. Yes, I may not look forward to seeing you, but to me, you were a sign of hope. (I say “were” because you have let me down so many times I now struggle to see you as being of assistance anymore.) As a doctor, you have the power to make a difference in my life, one that I need so very much, even though I am not dying.

Because I am struggling. I’m alive and will probably (and hopefully) be for a long time, but I’m not entirely sure I’d say I “live” every day. And I don’t recall the oath you took to say you would only show compassion and human decency to those who were dying. Something about your job makes me believe you are there to help everyone who needs your help, and believe me, I need it.

I am chronically ill. I am in pain. I don’t get to live my life to the fullest. I miss out on having fun. I have spent countless nights in a hospital bed. I will probably never get to do many of the things I dream of. Yet somehow, when I speak to you, this doesn’t seem to matter.

In what world would I possibly be lying about my symptoms? How could you possibly think that, as if I find enjoyment in wasting my time and money to see you? Do you honestly believe I would take the time to think up some long, painful story and tell it to you for fun? Because if you think that, I have no clue how on earth you possibly became a doctor.

You don’t have to completely understand what I go through to help me. I don’t expect you to know absolutely everything about my rare and invisible illnesses, but what I do expect is that you treat me with respect when I come to see you. I am seeing you because I want your help and because I know there is something wrong.

If you tell me one more time it’s “all in my head” and I just need to “speak to a psychiatrist” I will hit the roof. I see one every week and have for years. I have tried everything and exhausted every other possible diagnosis you could think of.

And your disbelief quite frankly does the opposite of help me, as you are meant to do.

In fact, it makes me feel like it’s my fault, which I will forever resent you for. Because if managing my physical health wasn’t hard enough as it was, you have contributed to (not solely caused, but still did not help) my anxiety that I now experience on a daily basis. You see, I am the only person who can truly understand what I go through, and when you doubt me, you make me lose faith in myself, which makes everything worse.

So next time you want to tell me that it must all be “in my head,” please think first about how that will affect what is actually in my head.

I needed you and you let me down. Next time, I ask you to look at me as more than my mismatched symptoms. I am just as aware of how confusing they all are as you, but they are real. I promise.

If there is one thing you can do to help me, even if you don’t totally understand, it’s to believe me. I cannot explain to you how much that would mean to me.

Sincerely,

Your chronically ill patient

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Thinkstock photo via utah778.

businesswoman writing ideas on paper

How I've Found Success as a Spoonie Entreprenuer


I’ve been laying low lately in a few ways and it’s because I was learning some valuable lessons about “spoonie-preneurship,” or the willingness to start and manage a business as someone with a chronic illness (people with chronic illness = spoonies).

In late 2014 I hired a coach because I was sick of burning out and sick of being sick. It became clear in our work together that the best way for me to do work I loved and have the time I needed to take care of myself was to start my own business. I’ve always been entrepreneurial, and I’ve started a lot of things, but I usually got sick before I could see them through. So, I dove into this adventure headfirst but always with some doubt about how I’d be able to make it sustainable. Some of my biggest worries early on were that:

1. I wouldn’t be able to work enough to run a business when a) I spend a lot of time in bed and b) I have to spend 20-30 hours a week on self-care. (I made a spreadsheet and calculated all the time I spend on self-care.)

2. Clients would fire me if I rescheduled them too much.

3. Learning about internet marketing, taxes and business stuff would be frustrating and mean a ton of time looking at a screen, which I hate.

4. People wouldn’t trust me to do business because I get brain fog, lose words and can’t remember things.

At this point, I’m a certified coach. I’ve been coaching for two years, and coaching is my primary source of income. I can’t say whether or not people think I’m smart, but so far no one has fired me for rescheduling. In fact, my clients have been very supportive, and I’ve seen that I can keep the business moving even if I can only work 10 hours some weeks. I do a lot of things differently from how a non-spoonie entrepreneur might. I’ve done some pretty productive writing from my bed, for example, and I rarely work more than three or four hours at a time without a significant break. In sum, I learned that all those fears I had were pretty silly. My number one biggest challenge, it turns out, was my fear – in particular, my fear of not being successful.

Recently, I got a little too stressed about my work, ignored signals from my body to take it easy and ended up in the emergency room with heart attack-like symptoms. All the tests came back normal and I later learned the symptoms could have been Lyme-related or related to a viral upper respiratory infection. I had been extra tired before the incident and on either side of the ER visit, I spent a lot of time in bed and a lot of time crying. I was scared and super sad about being sick again after almost a year of feeling much better. I also felt sure this recurrence of symptoms would lead to the inevitable moment when I’d have to bail on my business.

I see now that this latest health adventure was really just my body – the essence of my being, the universe, or whatever you want to call it – telling me I needed to chill out and take everything down a few notches. Instead of listening to that incredibly useful message, I was listening to my Monkey Mind (the internal dialogue we all experience that’s full of self-doubt, what-ifs, judgment and criticism) like it was my beloved guru. “Oh yeah, this is gonna suck and you’re going to fail, just like all those other times.” As a result, I was stressed and working more than I should have been to prove my Monkey Mind wrong. You can see how well that worked out for me.

We all have patterns and internal conversations like this that contribute to our dis-ease. Becoming a spoonie-prenuer really put my patterns front and center for me. Some amazing coaches and energy healers have helped me see just how clearly the patterns not only hold me back but keep me sick. Seeing that clearly hasn’t always been a party but it has given me the opportunity to choose something different. In my case, I’m regularly seeing scarcity thinking and choosing instead to look for abundance. When I’m not worried about not having enough time or money or health to be successful, I can see so clearly what I do have. Historically, one of my most familiar worries has been that I’ll have to do everything alone, that no one is going to help me. And, as if someone was trying to say, “Oh yeah? Let me show you how wrong you are!” I’ve been showered with support in the last year. An old friend has offered me countless hours of social media marketing advice and even sent me money to sponsor some video content. Someone I met at a support group three years ago called me to offer advice on a new program. My herbalist snuck me in for a last minute appointment last week without charge. Two different business coaches have offered me complimentary access to their programs. Clients old and new have reached out to share how much they’ve been inspired by my work and urge me to keep it up. In choosing to look for evidence of abundance instead of scarcity, I can see that people want to support me in doing this big thing and I need to allow them to do that.

Coaching is a great way to identify and overcome these patterns and it’s a huge part of the work I do, but there are other modalities too. I had great conversations about patterns recently with energy healer Heather Smith and yoga therapist Alex Bauermeister in the first two episodes of Healcast, a series of interview and Q&A sessions with holistic healers on Facebook Live. You can watch the videos here. Some of these modalities may resonate with you.

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Thinkstock photo via jacoblund.

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