missing piece in a jigsaw puzzle

The 'Chronic Conundrum' of Having a Sudden Change in Symptoms

You know that feeling when you are completing a jigsaw puzzle only to find that a piece is missing?

It’s a devastating moment. Your stomach turns just a little. All that work, all that effort, all that anticipation of a final outcome. A completed picture was the awaiting reward but it’s been snatched away from you!

Chronic and complex illness is so often like that. We are given a diagnosis, then another, then another and for some the list continues to grow with every medical appointment. Our medical team tries to put the pieces of the puzzle together.

Good progress is made. The puzzle pieces start to fit together. Treatment plans are made and followed with great anticipation that symptoms may reduce, even if a cure is out of reach.

A feeling of hope returns as you feel you are in the driver’s seat navigating the road ahead. Nothing can stop you now.

Nothing except a missing piece of the puzzle.

A chronic conundrum. A change in symptoms, a new symptom, a worsening of symptoms. A knowing feeling that something is not right. Your stomach turns just a little. Just like finishing that jigsaw puzzle only to find a missing piece.

Living with chronic disease is often referred to as “the gift that keeps on giving.” Labeling it a gift is a stretch at best but it definitely will keep you on your toes.

I have a worsening of symptoms and new symptoms. My conundrum is: Do I “watch and wait?” Do I make an appointment to see my GP? Do I go to the ER?

It’s a chronic conundrum faced by so many in the chronic illness community. It’s something we dread. We want to keep things moving on an even keel.

We don’t want to face conundrums, neither do we want to be a conundrum to our doctors or our family and friends. We would love to focus on something other than our chronic health but when it’s all encompassing and ever-giving, we can’t escape.

The reality is we will often be in this position so we need to find ways to cope.

I don’t have all the answers; in fact I often don’t have any answers, but I do like to problem solve and find a way forward.

A way out of my chronic conundrum restores peace and hope.

So I have made a plan and taken action to deal with this latest puzzle:

1. Stay calm. I’m doing this by writing and planning. Works for me!

2. Make an appointment with my GP. Make notes for my orthopedic surgeon.

3. Get organized with x-rays and notes for my physiotherapist.

4. Don’t change anything in my current treatment plan until I’ve spoken to my GP.

5. Rest and prioritize all necessary tasks.

6. Watch and wait with some of the new symptoms that require assessing. Discuss referral options to new specialists if needed with my GP.

7. Most importantly… Go and do something relaxing knowing that while I haven’t solved the conundrum, I’m back on track and heading in the right direction.

Until the next chronic conundrum, of course.

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

Thinkstock photo via BrianAJackson.


woman sitting on a park bench overlooking a pond

My Fears as Someone With a Progressive Illness

Life with a progressive and fatal illness can be hard.

The day-to-day can get marred with a great big “this will get worse” cloud.
Thinking of the future can be terrifying. You pray you’re still going to be well enough to enjoy what most people take for granted when looking into the future.

It can be scary and isolating, not wanting to upset loved ones with your fears for your future. There are far more emotional impacts than physical at times.

People say to focus on the here and now – one day, one week at a time – but that spoils the joy of being a mother or father at times, as part of the joy is looking forward to weddings and grandchildren.

It also makes you feel scared for your partner – how will they cope when your condition gets worse, or when you die? You worry they think you’re a burden now, so what happens when your illness progresses?

All these thoughts can greatly impact our emotional state and can make us moody, tearful and depressed at a time when the world is saying, “Enjoy the moment, make the most out of life, every day counts.”

Which it does and you do, but still this cloud follows you and whispers in your ear all the things you don’t want to be thinking .

With thinking of the future comes the fear that your illness is bad enough already – what will I be like when it gets worse?

It’s slow and painful, but I try and forget about it and be positive. I am determined to enjoy my time despite of this.

Although I want to live in the here and now, stay positive, make every moment count…this can also add extreme pressure because I know I should and I feel like the world would think better of me if I did.

I would love for people to remember me as a fighter – someone who never gave up, made every second count and stayed upbeat and optimistic to the end. But what if I can’t do that? What if I’m not brave and don’t make every moment count?

The only thing we can do in life (or death) is be ourselves. Dealing with a progressive illness is bloody hard and scary. But I try to console myself with the fact that many people with a progressive illness probably feel the same.

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

Thinkstock photo via tixti.

watercolor of a woman with long hair

From the Old Into the New: Embracing My Life With Chronic Illness

Quite an interesting title, I understand; however, as I pondered this writing for quite some time I couldn’t help but feel a welling up within me to share a piece of my journey that only those deep within my circle are aware of.

As a disabled, chronically ill person with multiple illnesses, why would we consider this life a “new” one? How could this even be possible? Far too often I read stories, social media posts, blogs and the like of people who are often stuck in the life that once was. The pondering thoughts of the career that can no longer be fulfilled, the family that doesn’t understand and support them, the friends that have turned their backs on them, the social events that are but a memory long gone…and my heart aches at the pain and sorrow that appears to be all-consuming.

I am often criticized for my optimistic approach to this chronically ill journey – at times, written about in the keenest of ways through poetry and prose. I do not let this sway me, however, for the reasons I am about to disclose. This is a very private part of my journey I hope will encourage change in your perspective on your own path.

In the beginning stages of my now many diagnoses, my family lost four family members to chronic illness within a few short years. In 2011, I lost my Aunt D, who was more of a mother figure to me and was the most difficult for me, personally, to go through. Following her passing I fell into a deep depression and wound up with an anxiety disorder in the same year. That was also the year I presented a seizure disorder which we now know is linked to one of my incurable illnesses called gastroparesis. Soon after, my mother’s father would pass away. My Aunt M, within the same family, passed suddenly due to complications from lupus and other illnesses and then my mother’s mother passed at the end stages of Alzheimer’s. Our family had experienced so much grief in such a short amount of time we wondered how we would recover from it. We couldn’t even hold a service for my grandmother because it was too unbearable for us all.

I went through talk therapy and medication management to work through my diagnoses, pulling from my coaching certification and one thing my aunt who had passed away in 2011 and I had made a pact about. This is the piece I’d like to bring out. She was always a bright and shining light in my life. Even during her chemo treatments. No matter how sick, no matter how bad the pain, she loved relentlessly and unconditionally. She made me promise that no matter what, I would not allow any illness to define me. She knew me. I was a fighter. I have always been a fighter. I was always positive and optimistic. I suppose I was born that way. I think it annoys people sometimes but I like to think it helps more than hinders. No matter, she made me promise to help as many people as I could with the gift of love and positivity. To be a light to others. To show them that in the midst of any storm they too could make it through if they had someone to encourage them and a hand to hold. And so I do. This has always been me.

Why “From the Old Into the New?” Because I’m not that person anymore. I’m not well. No, I’m not. I can’t do the things I once could but that’s OK! What I can do is something new! I’m a patient advocate, I’m a “teacher” regarding what I’ve tried as far as treatment plans and medications and I present that back to others (I am actually a former teacher so this ebbed and flowed quite nicely into my new path). I’m a coach and I encourage, love and lift others up. I’m a philanthropist and I give back with a team of other beautiful women who share the same heart as I do. I’m a mom of a child with autism and I advocate for him as well. I’m a lover of all people and I do not judge. That is not for me to do. I’m a lifelong learner of new things and I educate as much as I can. I appreciate balance on a whole new level and listen to my body and take more time for me instead of pouring every bit of it into the corporate world. More so, I have made new relationships that are true and matter, as opposed to false or pretentious ones where people are only there when it’s convenient for them. Is the “new” challenging? Yes! Is the “new” difficult? Sure! But is the “new” a little bit more real and fulfilling with more wonderful moments than the old? For me, I would say so!

I hope this encourages anyone who is still mourning the old life. The new one holds more than you think. You just have to look for it and have some support people in place to help you when you need it. Give yourself grace too. Sometimes it’s OK just to be OK.

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

Thinkstock photo via kotoffei.

Medical woman comforts young female adult as she stands with her back against to the wall in a hospital corridor. Head in her hand she looks very upset.

10 Survival Tips for Dealing With Chronic Illness Distress

Chronic illness is stressful. As an advocacy organization that works directly with patients, Good Days regularly assists individuals who not only need financial resources to cope, but require emotional support, too. We asked our patient care specialists and the Good Days’ community of friends who have personally dealt with chronic illness to share their survival tips for dealing with distress. Here is what they had to say:

1. “Remember that attitude has a lot to do with it. Attitude, genes, prayer and medicine.” – Anton T.

2. “Write down your thoughts, dreams and ideas.” – Samantha C.

3. “With chronic illness, everything you take for granted in your life can feel as though it is falling apart. To make the best of your situation, you cannot give up. You must own your experience with your doctors.” – Brenda H.

4. “Take 30 minute daily walks.” – Sabrina T.

5. “Attending church services or non-denomination spiritual services can be very therapeutic.” – Sabrina T.

6. “Stay positive. You have too much to do.” – Anton T.

7. “People are often too proud to ask for help. It isn’t easy. Remember that there are guides and resources that can assist you. They don’t want to take your pride away, they want to help.” – Brenda H.

8. “Hope keeps you going and it’s so important.” – Kim W.

9. “Embrace your faith. It’s OK to say lots of prayers for yourself and others.” – Nancy O.

10. “Sometimes the hardest thing is knowing you are that person or family. But keep fighting and you will find some absolute lifesavers along the way.” – Hanna B.

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

Photo by iStock

two women sitting outside and talking

The Anxiety I Feel When People Ask, 'So, What Do You Do?'

I truly dread meeting new people. Small talk and idle chit-chat usually lead to being asked anxiety-producing questions like “So, what do you do? Where do you work? Are you working full-time?” Where is a trap door when you need one?!

I never ask anyone these questions because I don’t want anyone to ask me these questions, because I don’t have an answer – well, not a good one anyway. Since I was 15 years old, I’ve always had at least one job. I haven’t had steady work for about six years now and I really don’t like to talk about it all that much. As a person living with chronic illness (that sometimes needs a two-hour nap after a trip to the grocery store), I just don’t have the stamina for a job or the conversation.

When I meet someone new that asks me about my work, I usually say something like, “I’m between gigs right now.” If they press for details, I start stammering a long and turbulent story of my work history (a.k.a. my resume) in a desperate attempt to let them know there is nothing “wrong” with me – I am employable! I usually leave my medical resume out of my ramblings. I’m not sure, but I bet there is probably some Emily Post rule out there somewhere about the timing of introducing the topics of brain surgery and bowel habits into a conversation with someone you’ve just met.

It’s when we part ways that I beat myself up, wonder why I said all the dumb things I said. I get caught up in comparing myself to others, thinking I’m not good enough or worthy of their time because I am not gainfully employed. I find myself projecting what they may be thinking: Are they judging me because I do not have an employer? Do they think I’m lazy? If only I tried harder? Am I too picky? I berate myself for not having a job; if I had a job, I’d have an acceptable answer. Over-thinking: 1, Kelly: 0.

I’ve tried making my employment status into a joke by giving clever yet evasive replies. After a few chuckles from the crowd, I somehow end up apologizing for being flip and go back to my old spluttering script. Here are a few of the responses I have tried:

Self-unemployed: One time someone responded, “Oh, an entrepreneur, how exciting!” I’m not sure if they missed my joke or if they were playing along and I missed their joke.

Domestic Goddess: I stole this one from Roseanne Barr. Usually makes people laugh but I think most don’t know of its origin. I’ve actually had to explain who she is and it kind of takes the fun out of it.

Alchemist: I can take ordinary water and make the most fabulous soup you have ever tasted. And at Thanksgiving, give me the picked-over turkey carcass and I can feed you for days. Actually, I’m very much like Jesus; water to wine, loaves and fishes? Please!

Professional patient: While true, it does catch people off guard and can make them feel uncomfortable and head for the hills. Essentially it gets me the result I claim I want: to be left alone.

Seriously though, after some much needed self-reflection, I’ve come to realize that yes, I indeedily-do have a job; it’s called taking care of myself. What I don’t have is a paycheck.

The other day, I decided to test this new response out. I was attending a conference and someone asked me one of the million dollar questions, “Do you work full-time?” I calmly answered, “Yes, I work full-time at Taking Care of Myself and waited for her reaction. She didn’t ask for details so I offered none (I thought my head was going to explode!). She just smiled at me and said, “Good for you!” Over-thinking: 0, Kelly: 1.

This post originally appeared on Write Down the Middle.

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

Thinkstock photo via Szepy.

image of woman in wheelchair, woman looking out window at hospital, and man holding young boy in london

10 Awesome Instagram Accounts By and For People With Chronic Illness

Facebook can be great for keeping up with friends and family, but Instagram is the place many people with chronic illnesses turn to for support from fellow spoonies. Whether you’re looking for funny memes, reviews of treatments and products, or others who are going through similar health challenges, there’s likely an account for you, and the comment threads are likely filled with others looking for support just like you.

We rounded up 10 of our favorite Instagram accounts run by people with chronic illnesses, for people with chronic illnesses. Did we miss your favorite, or do you want to share your Instagram handle with the community? Comment below with the Instagram accounts you’d add to this list.

1. The Tube Fed Wife

Mighty contributor, motivational speaker and Seattle “cat mom” Chanel White, aka The Tube Fed Wife, shares the ups and downs of her life with scleroderma, for which she recently underwent a stem cell transplant. She takes followers inside the reality of her medications, symptoms, doctor’s appointments, and even her spoonie fashion.

2. Gutless and Glamorous

Gaylyn Henderson calls herself “gutless and glamorous” after getting an ileostomy due to Crohn’s disease. She proudly bares her stomach and ostomy bag on Instagram to promote body positivity and encourage others who live with health struggles.

3. The Hurt Blogger

As The Hurt Blogger, Britt Johnson advocates for patients with chronic pain and illness and shares her experiences with rheumatoid arthritis, ankylosing spondylitis and Behcet’s disease.

4. Suffering the Silence

Suffering the Silence is a nonprofit dedicated to raising awareness of chronic illness and disability through art, media and storytelling. On their Instagram, you’ll find out about events, businesses and advocates that bring together and empower the chronic illness community.

5. Fibromyalgia Inspirational

Looking for inspiration and a community that just “gets it?” Fibromyalgia Inspirational shares memes that encourage followers in their fight, and poses questions that allow followers to discuss how they deal with the symptoms.

6. Karolyn Gehrig

do they like me in blue lips because i can look both breathless and alive #hospitalglam

A post shared by Karolyn Gehrig (@karolynprg) on

Karolyn Gehrig started the #hospitalglam hashtag in 2014 to empower herself and others during dehumanizing doctor’s appointments. She lives with Ehlers-Danlos syndrome, and frequently posts magazine-worthy images of herself posing on hospital beds and in doctor’s offices.

7. US Pain Foundation

As a nonprofit working to advocate for those living with a variety of chronic pain conditions, the US Pain Foundation posts inspirational memes and has designed a “Positivity Photo Challenge” to encourage followers to share where they find happiness in their lives.

8. Young People Chronic Illnesses

Day 14 – This is @Tomhomer1 and this is Toms story! I’m Tom, 37 from London. I was diagnosed with CF at the age of two and considering some of the people with CF don’t make it past the age of eighteen, I feel extremely privileged to get to the age I am. CF can be a very time consuming illness with hospital stays, doctors appointments, physio and treatments taking up much of our lives.Fortunately, I’ve had breaks in the severity of my illness which has allowed me to do some much loved traveling, work, get married and since 98% of males with CF are infertile, manage to beat the odds and have a son via IVF.Unfortunately, CF is a progressive illness which means my health regularly declines, sometimes it’s permanent, sometimes not, but since I was particularly Ill last year my CF team decided it was time to be evaluated for a double lung transplant.It was a daunting thing to get my head around and accept that my health has got to that point, but I’ve so far luckily managed to stabilise and stay off the transplant list for a few years more *fingers crossed*. CF can be extremely brutal at how quickly it can take someone’s quality of life away, so I believe it’s important to make the most of life when you can. #CF #CFWarrior #cfawareness #cfawarenessmonth #cysticfibrosis #cysticfibrosisawareness #cysticfibrosisawarenessmont #spoonie #spooniestrong #spooniespotlight

A post shared by DM us about Spoonie Spotlights (@youngpeople_chronicillnesses) on

Run by (you guessed it) young people with chronic illnesses, the account features photos and stories of teens and young adults facing various illnesses. The account also shares facts and memes about chronic illnesses that can be passed along to spread awareness.

9. Tae McKenzie

Model, actress, fashionista and stroke survivor Tae McKenzie shows off her impeccable style while living with epilepsy. She also holds the title of Ms. Heels for Wheels.

10. Stickman Comms

I’ve felt a bit worse than usual for a few days, for no clear reason. Today I have a sore throat. This usually means I’m getting a cold. My body can’t handle them very well – my POTS (heart rate) issues can go totally haywire. Plus hormones are approaching too. Double whammy. So today I’m prepping for approaching storms of #fog, #pain and #fatigue. Perhaps they’ll hit today – perhaps in a few days. Perhaps they’ll leave me barely able to sit up. Perhaps they’ll only be mild this time. Fingers crossed! But it will pass. I will get through. And the best way to get through is to be prepared:⠀ So between resting and eating vitamin C I am preparing:⠀ meds⠀ tissues⠀ throat sweets⠀ heat packs⠀ blankets⠀ restock groceries⠀ easy-eat, no-prep food.⠀ audiobooks⠀ Book PA to send out all orders⠀ Set up business related posts for next few days.⠀ ⠀ I’m actually close to ready now.⠀ I’m not looking forward to the storm hitting, but knowing that I’ll get through it helps.⠀ ⠀ And so do fluffy socks.

A post shared by Hannah Ensor (@stickmancomms) on

Hannah Ensor uses stick figures to illustrate life with chronic illness, from the challenges of shopping at IKEA with a wheelchair to the frustration of dealing with brain fog. She also creates cards that explain the basics of health conditions like Ehlers-Danlos syndrome and celiac disease and can be passed out to those who need to be educated about your illness.

Tell us about your favorite (or your own) Instagram accounts in the comments below.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.