I have written the following post in collaboration with Sam Moss of My Medical Musings and I have referenced some of the posts that Sam has written there. It makes for powerful reading in terms of what you can do to better manage your personal circumstances when you find yourself in a place of despair. Her learnings will also help anyone undergoing change when that change is occurring through choice.
Here’s some of her story.
Sam retired early, from a successful Executive Management Career in financial services, due to chronic disease. Her background is not dissimilar to mine – in change management. Her illness though is different. She has a rare disabling bone disease, Rheumatoid Arthritis and a permanent colostomy.
Sam has been through the ringer. Suffering from a rare bone disease (that is so rare it doesn’t have a name), she’s had many moments of pure desperation at her predicament.
Her life is in limbo. She’s often in pain and she’s exhausted. She faces more surgeries and an unknown future.
Like anyone else, she wants to be able to prepare for what the future holds in some way. We all, in general, like to plan ahead in life. We look forward to things. It’s called living.
Managing life when it’s in limbo
But Sam’s life is in limbo.
Sam has needed to be prepared for more of the unknown, with more questions than answers forthcoming. She has needed to be strong and stay strong.
She has needed to find ways to live in the limbo.
She identifies with having been through the five stages of grief:
Griping – this stage is when you feel like you just can’t do this. It’s all too much
Groaning– this stage is the complaining stage.
Groping – this stage you begin to walk forward as if in a forest, moving the trees out of your way so you can begin to see a little clearer
Grasping – You begin to understand what the new situation means
Growing – You embrace the new, find ways to live again and acceptance brings peace.
Sam says she’s journeyed through this model a number of times over the years and thinks she might be travelling through it again after having received further disappointing news about her bone disease.
Yet despite living with an extremely painful and disabling health condition, Sam has found the positives in her predicament. They would be relevant for anyone going through any type of change. And to reference them in relation to Sam is to show how powerful they are if you are prepared to embrace them. They are 3 seemingly simple things that really help her live a fulfilled life despite uncertainty, pain and disappointment.
Focus on “what is”
One thing she has learned is that you can’t live with the “what ifs”.You can only live well with illness with what is. What ifs can be paralysing Click To Tweet
They are paralysing, soul destroying and will leave you so mentally disabled that you will never experience the joys that can be found when you cease asking “what if” and start focusing on “what is”.
Look around you. Acknowledge your current challenges. That’s important. Being in denial only causes longer term problems but don’t forget to count your blessings. Name them. Write them down.
Life may not be perfect but it’s still your life. Your life to be lived to the fullest within the bounds of your physical limitations.
While Sam has many real daily challenges associated with living with a rare disease, let’s for a moment take a look at the positive side of “what is”:
What is can be…
- You live with your predicament, you manage it, you have amazing strength
- You have incredible empathy for others who experience hardship
- You love life, you cling to it and you find ways daily to enjoy it as best you can…however you can, however small
- You enjoy the simple things in life and you cherish them.
- You never take anything for granted.
- You know life can be uncertain but you know that change can bring new opportunities.
- You know that tough times happen but you know the intensity of those times does pass and that joy returns.
If you are experiencing a season of asking “what if?” and worrying about the future, acknowledge your concerns but then take a break from that question and focus on the “what is”.
“What is” allows you to break free from unnecessary despair. It allows you to breathe more deeply and evenly. It allows you to think more clearly, conserve your energy and focus on the real challenges you might be facing, not ones that may never happen.
Patience with yourself. Patience with everyone who struggles to understand what it’s like being you and your new predicament.
Patience isn’t something that comes easy to Sam. Often being referred to as “instant Sam” by friends and family, if she has a goal, she has always put 100% of her energy into achieving that goal as fast and as well as she possibly could. Hearing this reminds me of certain someone else – me! But she has discovered a whole new level of patience over the past 7 years and patience is one of the keys to her living well with chronic illness.
So how did she become so patient? Well, she learned quickly, once her health deteriorated, that if she wanted to be involved in an activity she loved, slow and steady was the only way of doing it. If she rushed she would literally, physically fall in a heap. A lack of patience in the early days quickly taught her that wasn’t a smart way to live a new life.
She has also learned that patience brings a wonderful sense of peace. As expectations are re-aligned, pressure is reduced. Giving yourself permission to live at the pace your body allows is amazingly freeing. I totally agree with this, freedom was such an unexpected discovery for me when my health took a turn for the worse. I was ultimately in the driving seat and only I could make the difference. That’s a pretty liberating place to be.Giving yourself permission to live at the pace your body allows is amazingly freeing Click To Tweet
Only you can give yourself that permission. It’s nice to have others support but ultimately unless you allow yourself to adjust your life it just won’t happen. She also believes that if you don’t adjust your life, others in your life won’t get the true picture of how much your predicament is affecting you and you are at risk of falling into a vicious circle of not feeling supported.
Sam thinks it’s really important to work out your limits and let others in your support circle know exactly what those limits are, so that they have a clear picture of what they need to do to support you live the best life possible. Remember though to be patient while they adjust to the changes you are making. It’s all a process and it all takes time to achieve. Keep in mind your change in health or circumstances is also a change for everyone around you. I second that, people often have a vision of you based on the past, it takes some time for them to get used to the new you and to fall in synch with that.
Then there’s purpose!
I am great supporter of this one. Once you have realigned expectations and discovered you can be patient with your new circumstances, purpose is then so important.
We all need purpose in our life, no matter how large or small. For some that might be achieving goals like reading an entire book series you’ve always wanted to read or, if you are mobile and can get out of the house for a while, joining a craft group or a choir. It might even be doing something entirely different and turning that hobby you have into a new career.
Due to Sam’s disease and disabilities, she is pretty much housebound so she needed to be inventive and find purpose at home. Starting her blog two years ago was the beginning.
A little like my own experience, Sam was nervous about opening herself up to others. She writes about deeply personal things but felt she needed to tell her story and hoped it would eventually reach others who were experiencing a similar journey. She really wanted to just write because she loves writing. She had previously (in her 20’s) studied freelance journalism and non-fiction writing so it was a long time love which she suddenly had time to explore. This for me, is one of those positives than can spring out of adversity. You get a chance to reconnect with elements of yourself that have laid dormant for some time. Opening those things up again also gave me inspiration and hope during some desperate times.
Sam also had a deep desire to serve others. She knew she couldn’t volunteer outside of the home but she helped managed a couple of online support groups whilst navigating the needs of her health.
At the start of this year, it was clear that Sam’s disability was not going to improve, in fact it was worsening. She found she had more time on her hands and she felt she needed more purpose. Her blog was expanding slowly and she began writing some articles for The Mighty. She was satisfying her writing desire but she wasn’t fully satisfying her desire to serve. So she started her own Facebook Group: Medical Musings With Friends and the rest as they say is history!
It’s rather uncanny learning about Sam. She has in some ways had a similar career to me in change management. She has a chronic health condition as do I (though I must add the severity of what Sam deals with is different to my situation). But we both have an innate need to help others. I can’t help think our change backgrounds led us both to a similar destination.
Thanks to living with what is, patience and purpose, Sam lives an incredibly full life from her lounge room, her bedroom and her back deck. She connects with people from all over the world and provides a service where others can feel supported, where they can share their stories, their blogs and their articles. A place where they can make new friends and a place where they are not judged for what they can’t do but celebrated for what they can do, despite their diseases.
If you are starting out on your chronic illness journey, or perhaps have been struggling to adapt with any dramatic change brought to your life, Sam’s advice is to take a breath and be still for a while. Be patient with yourself.
Take time to review how you are trying to live and how you need to be living. Slowly start to make the necessary changes that allow you to live a life where you are patient with your new circumstances. Share your thoughts and the changes you need to make with someone you love and trust. As you remove things from your life that you can no longer do, replace them with things you can do. Find your new purpose, explore it, dream about it and patiently put it in place.Slowly start to make the changes that allow you to live a life where you are patient with your new circumstances Click To Tweet
Life is not over, even if it may feel like it is at the moment.
With time it is possible to begin living again and with patience and purpose being your new friends, a different and fulfilling life can slowly emerge.
For more information on Sam’s story and to join her Facebook group you can find all her links here:
Her blog My Medical Musings
Go check out her page and group, this is one amazing lady!
Looking to live better with chronic illness? Check out info on my Facebook Group and Freedom to Choose coaching program below:FREEDOM TO CHOOSE