Chronic Illness and Grief, 10 stories

chronic illness

Part 1

Author: Ann Grandchamp, Mental Health Editor

Are you ready to be moved to tears? To be encouraged and to feel less alone on your own journey? Are you ready to feel inspired?

Then jump into the stories of 10 amazing women facing or having faced chronic illness. Today I’m sharing the first 5 stories of 5 brave and authentic women. I encourage you to make yourself a cup of tea or coffee, sit down with a piece of paper and a pen and write down the things that inspire you or the tips that you want to put into practise yourself.

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My Swiss Story: Chronic Illness and Grief, 10 stories

STORY 1 – Ann Grandchamp

I was asked to tell you my story first. So here goes.

Q. What illnesses have you suffered from?

I used to have chronic anxiety, which started at a very young age, depression then severe post-natal depression and asthma from the age of 8.

Q. Would you say you’ve gone through a grief process because of it?

In a way, at the time, I had to come to a point where I accepted my illness, with its limitations and at times debilitating invisible symptoms. With its medication. But I always knew, deep inside, that one day I would be better. That all I had to do was hang in there, take things one day at a time, sometimes one hour at a time, until I found a way out of my misery. I had a deep-rooted faith that life would get better.

Q. What helped you through this time?

In my darkest moments, it was my faith in God and the knowledge that my life was precious that kept me going and that stopped me from taking my own life. I thought about it many times, when the pain was so deep that I felt like ripping my skin off. But I knew that my husband needed his wife, that my children needed their Mum and that I would find a way out.

I don’t often talk about this part of my journey. I’m quite private about my faith life. But there is no question that this is what saw me through while I waited and searched for a way out.

I was taking medication, which wasn’t really helping, and searching for another solution. I came across a 3 day training program called the Lightning Process during which you learn how to rewire your brain and to train your brain to tell your body what to do so that you can get better when you are stuck in your life or stuck in your health. It’s based on the science of the mind body connection and neuroscience It sounded like what I needed but for whatever reason I didn’t do it straight away. But then I was driving one day and I thought:

Ann, you’re just existing. You are waiting for each day to pass so you can get to the next one, and then the next one, until the day you die.

That day was my turning point. I signed up to the course and on the on the 1st of August 2016, I was sitting in the practitioner’s training room with 6 other desperate people, and for 3 days I drank in every word and learned how to train my brain to tell my body what to do.

After day 1, I experienced BUBBLES OF JOY! (I hadn’t experienced that in over 7 years)

After day 2, I went clothes shopping and didn’t have one single negative thought about myself (I had never experienced that).

After day 3, I was actually looking forward and excited at the prospect of going on holiday to Fiji with my family (I had never looked forward to spending several days in a row with my kids with no respite. To that day I was dreading that holiday and was wondering how I would get through it).

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My Swiss Story: Chronic Illness and Grief, 10 stories

2 months later, I was not depressed or anxious anymore. I used my calm voice so much more than before. I enjoyed being with my kids a lot of the time. My allergies had all but disappeared, and on the rare occasions when I did have symptoms, I did the Lightning Process steps, and they went away. My self-confidence had grown in leaps and bounds. I was not afraid of the future and had confidence in my abilities. I experienced joy and happiness. And my daughter gave me 2 amazing gifts. She said to me one day shortly after I did the training: “Mum, you actually laughed today!”. And on another occasion, she said: “Mum, you don’t get angry anymore” (I do get angry, but I am able to control it now). I could now burst out laughing. I could giggle. 

I now feel empowered to change the thoughts, feelings and symptoms I want to change as soon as they appear.

4 years down the track, I’m still well and enjoying life. Yes, life has ups and downs but I deal with the downs in a life enhancing way. I’m now a trained Lightning Process practitioner working in Switzerland and teaching others these life changing tools. I feel very privileged and honoured to do the work I do.

Q. What would be your top tips for someone who has just found out about a chronic/life threatening illness or is struggling with this reality in their life.

Keep on hoping and keep on searching for a solution that works for you. One thing might work for one person and not for another, but never rule out an option without looking into it thoroughly. Take chances and look after yourself first.

STORY 2 – Manisha Chandarana

Q. What illness are you suffering from?

Relapsing Multiple Sclerosis, which was diagnosed in 2011.

Q. Would you say you’ve gone through a grief process because of it?

According to the Kübler-Ross model, there are five emotional stages of grief: denial, anger, bargaining, depression and acceptance. After my diagnosis of MS, a currently incurable, life long, fluctuating and degenerative neurological condition, I experienced all five of these stages.

At the time, I didn’t realise it and there were moments when I thought I was losing my mind as I experienced a rollercoaster of emotions. For the first few months, I put on a brave face. My twin sister had already been diagnosed with MS for a few years, and while it is not a hereditary condition, there are genetic tendencies, so it was less of a surprise when I was diagnosed. People assumed I would be ok with the diagnosis as I’d already had to come to terms with my sister’s. So I went about my life as if nothing had changed. I managed my symptoms, which were relatively mild at the time, and mistakenly thought I was dealing with everything fine. That was the first stage: denial.

After a few months, I began to realise that this illness was not going away. I was finding things harder. My fatigue was getting so bad, I was falling asleep wherever I sat because I didn’t have the energy to even make it into bed. I was struggling to play sports and I was getting injured more often because my reactions had slowed down. I started to get more and more frustrated. I was in my early 30s yet felt like an old woman. I started to feel like life was so unfair and this quickly turned into anger, bargaining and depression.

Why me? What had I done to deserve this diagnosis? I started having problems sleeping and became snappy. I also started acting out of character. I’d always been a shy person and quite insular. I started wanting to go out all the time. I wanted to be anywhere other than home so I could forget I had been handed a life changing diagnosis. My appetite waned and I started losing weight. I’d always been slim but people started commenting on how skinny I’d become and my clothes started hanging off me. I felt like I was lost in this maze of emotions I didn’t understand.

It was a frank discussion with my husband which led me to seek help through my family doctor. I was diagnosed with depression and finally pointed in the direction of counselling – something which I think should have been offered immediately when I was diagnosed.

The physical illness is always at the forefront of a neurologist’s mind when it comes to MS but it is well documented that many people go on to experience mental health issues as a result of their diagnosis.

With help and support, I came to accept my diagnosis and I could finally start adjusting and adapting to a new normal.

Q. What helped you through this time?

Personally, finding a counsellor and talking through what was worrying me about my diagnosis helped me to come out of my depression. I was (understandably) scared about what the future may hold for me, my husband and any children we may have.

MS is an uncertain and unpredictable disease, something which goes against my character as I’m someone who likes stability and predictability. Talking about these fears helped me come to a decision to start a disease modifying treatment straight away. I’d put off the decision as part of the denial process. While these medications cannot cure the disease, they can help slow progression. And this made me feel like I was taking back control. I also started going to an MS Therapy centre for physiotherapy and fitness so I felt that I was keeping my body as strong as possible in anticipation of any relapse which may come along.

My family and friends were also of great support. They didn’t judge me or my decisions, they did their own research into MS and how best to help, and they were there with a shoulder to cry on when I needed it. I also joined some online support groups so I could connect with others in my position. I found empathy and understanding among the members, as well as being a useful source of information on disease management.

And finally, I found something else to focus on – kind of like a bucket list. My attitude changed from ‘someday’ to ‘today’.

Although there were things I could no longer manage, there were other things I discovered I loved. I took up cycling and started hiking as I could adapt the pace and intensity to my own abilities, I took holidays to places I’d always dreamed of going and learned how to knit. I no longer felt guilty if I had to say no to events when I wasn’t feeling up to it, but I also made sure I made the most of my good days. This really helped me not only through my MS diagnosis, but also later when I was diagnosed with other conditions.

I’ve come to terms with my diagnosis now. It’s with me for life and although there are times when the negative feelings resurface, because the unpredictable nature of the disease does make it scary, I know I can cope with it through the strategies that I’ve developed.

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My Swiss Story: Chronic Illness and Grief

Q. What would be your top tips for someone who has just found out about a chronic/life threatening illness or is struggling with this reality in their life.

Top Tip #1: There is no right or wrong way to handle a diagnosis like this. What is important is that if you’re struggling to cope, then you or someone close to you seeks help. I would even go as far as to say – seek support from a mental health counsellor at the time of diagnosis even if you think you are doing ok. Just in case.

Top Tip #2: Build a support network. This could be family, friends or others in a similar situation as you are. Although medical professionals are experts in their disease areas, your family and friends are experts in you. And talking to others who have been diagnosed with the same illness as you, can not only provide a sense of togetherness through the tough times, but also people who can fully share the little victories. With MS, those victories can sometimes just be managing to take a shower on a day when fatigue has you floored or being told you have no new lesions on your latest MRI scan.

Top Tip #3: Be kind to yourself. If you’re not coping well, then rely on the strength of others to help you through. Find something that you enjoy and make time for it. Adapt to new circumstances and celebrate the things you can do rather than what you can’t. You don’t have to give up on your dreams, you may just have to find a different way to achieve them. And accept that it’s ok to have bad days but at the same time, relish the good ones when they come along.

STORY 3 – Lynne Faires

Q. What illness are you suffering from?

I knew long before I was diagnosed with Fibromyalgia that something wasn’t quite right. For years before I had my diagnosis, I had a poor immune system, headaches, random muscle pains and aches, horrible fatigue, depression, brain fog, vertigo and about 60 other symptoms that come and go. It has been a little over three years since I received my diagnosis of fibromyalgia and a little over one year ago, hypersomnia was added in as well after being referred to a sleep clinic for my fatigue.

The worst part about discovering it was Fibromyalgia, was that there is no cure.

So other than knowing that my body goes into deep sleep cycles twice as much as the average adult, even during the day, I have no other explanation of what is happening in my body! This made it even harder to know how to address it in a way that would work effectively!

As of right now I am learning how to deal with the chronic pain and discomfort and manage the symptoms as they come and go. I have massively shifted my life in order to accommodate the routine that is necessary to avoid flare ups (an intensity in symptoms) usually to the extreme where being bed ridden for a week or more isn’t unusual.

However, I can’t say it has been all bad. Once I realized that I had to really change my life, things shifted for me.

Q. Would you say you’ve gone through a grief process because of it?

Chronic illnesses (regardless of what they are – MS, Autoimmune diseases, Fibromyalgia, Chronic fatigue syndrome) don’t have much support from the medical community other than medication and regular check-ups to make sure nothing is getting worse.

This means that anyone diagnosed will have to go through some major life-changing experiences to even remotely feel that they are in control enough to have some semblance of a normal life.

For me it was almost as if I had to hit rock bottom to realize I was creating a lot of the chaos in my life and that my body just couldn’t keep up with the stress of everything that has accumulated in my life.

I have had to go from being a Type A-personality, super woman, super mom who always had everything together – to feeling as if I had lost my superpowers as a woman with perfection at its highest regard!

Because of this I have carried a lot guilt with me over the last 6 years. Everything from not being adequate for my children or letting down my husband because I wasn’t “who I used to be” for him.

Grief is a definite part of learning how to live with your chronic condition. You really have to let go of the idea of the life you were “meant” to have!

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My Swiss Story: Chronic Illness and Grief

Q. What helped you through this time?

Most of us start planning our lives from the time we are little. Whether that is to get married one day and have kids or to become a doctor, it is usually something spectacular. Life starts unfolding exactly how you planned it. You have the kids, the perfect husband, a career you are passionate about and then it all comes to a full stop if you are diagnosed with a chronic condition.

I feel that it took me forever just to admit to myself that I had “fibromyalgia”, but acceptance was absolutely the first step in letting go of the guilt and grief I felt for losing my “old”, dreamed-up life.

The truth was, I had had a stressful life for someone in their early 30s. The need for survival from a young age had really left its marks on me. From moving out at the age of 15 all the way to being a single-mom of two little boys by the age of 22, it didn’t stop and hasn’t really, if I am honest, until I learned to look at my behaviors and coping mechanisms I had collected along the way! These included:

  • Over-eating
  • Craving certain comfort foods
  • Addictions (coffee, sugar, exercise)
  • Cleaning

These issues were bringing me down continuously because it led me to be unhappy in my body, not knowing who I was as a person, feeling unloved and lost.  I realized this was all the pain I was feeling in my body. The anxiety that came from my past is what encouraged me to continue my bad habits and from there it was a downward spiral. And that is when I realized my “dreamed-up” life wasn’t the life I had wanted for myself at all!

All these realizations caused me to look within. I was sick of being unable to do anything! I wanted to do the things I enjoyed so much more than I ever had in my life, even just to feel comfortable through dinner with my family!

I decided to follow my instincts and tapped into “me”. I realized I needed to change the poor habits/coping mechanisms for ones that would make me feel like myself again. I needed to drop the stories I carried from my past and do a lot of work on discovering what I enjoyed in life.

I left my job as a nanny and currently work from home about 10 hours per week. I have created as much balance in my day to include the following:

  • Heading to our family garden to work early. I stay for as long as I can but ensure that I am putting my whole heart into it.
  • Yoga and meditation practice each day. I allow myself to move with the “flow” and experience what I am feeling in my body to guide me through a new routine each day. I don’t usually follow a set plan laid out by another instructor.
  • I have started creating again! As a young child/teenager I was in love with writing, art, and crafting. So, I have made sure to allow space for something “creative” every day – it usually is whatever inspires me through my daily walks, trips to the garden, or something fun to make my space feel for comfortable.
  • I really focused on my nutrition – ensuring I was getting a balance of everything I knew I needed to help rebalance my symptoms.
  • Finally learning how to respond to all life’s events, instead of reacting. This included asking for help, especially with household “management”! It took a lot of work to get my needs across to my husband and for us to relearn how to balance our life around my condition – but it really was a necessary part of starting to manage things.

Q. What would be your top tips for someone who has just found out about a chronic/life threatening illness or is struggling with this reality in their life.

You are your greatest advocate. No one knows what your experience is like going through this time, but you. This means that it is so important to take responsibility for your health and how you are feeling or dealing with it.

It took me a long time to realize that no one else was going to ensure I was getting enough sleep, was nourishing my body with optimal foods for my condition or would tell me to slow down! It was me who had to learn how to do all this for myself. In order to do this, I had to find people who were supportive of my condition to help me. This included the right doctor, psychologist, yoga instructor, friends, and I even hired a mind-clearing coach! Most importantly, this included my connections online as well. Unfortunately, because depression and anxiety, fatigue etc. are part of our conditions, we spend a lot of time in bed, it also means we spend a lot of time online! I always found that this encouraged me to find people who were “suffering” as well. This only ended up reinforcing my feelings of guilt, shame, lack of “mom-powers” etc. as this is what most people can relate to in their condition. I really needed to get away from this to come to the conclusions I have above!

I needed to focus on me every spare minute I got! I actually wrote a blog post about this very topic, because when I realized that I didn’t need to get a terminal illness to really care for myself – it made a world of difference!

STORY 4 – Nikki Emerton

Q. What illness are you suffering from / have you suffered from?                  

In 2009 I was diagnosed with Fibromyalgia, Chronic Fatigue/ME and suffered with anxiety and depression for around 30 years or so. I’ve had 4 bouts of post-natal depression and 1 of pre-natal.

My Swiss Story: Chronic Illness and Grief

Q. Would you say you’ve gone through a grief process because of it?

Momentarily (weeks rather than months), I grieved for the future my consultant said I would never have – the ability to care for my children in a way that my Mum hadn’t for me and my brother, to be healthy, to have the energy to be active with them and enjoy life’s blessings that you get in seeing your babies grow and develop into capable adults.

I was already depressed, and it was a pivotal moment.

Unlike the other depressions I experienced, the weeks after the diagnosis seemed to ignite a fire within, a passion to not be like my Mum and I was willing to do whatever it took to change my life’s course.

Q. What helped you through this time?       

Undoubtedly my partner. His unwavering presence, no matter what. He never wavered, never threatened to leave, never blamed or shamed me for my mental and physical illnesses. He encouraged me when he saw a glimmer of hope that I might take positive steps forward and accepted any times I slipped back again.

It was my partner that encouraged me to do the Lightning Process training. I had no money of my own and we had 4 children, one income and I felt unworthy of spending money we didn’t have on me. It was he who said, ‘what do you have to lose? What if it does work, in 6 months’ you’ll be back at work, you’ll look back and it won’t matter.’

I held onto his belief in something that I could not yet see and did the Lightning Process training.

From the very first day, my fatigue had gone and by the end of the 3 days, so had the pain. I can honestly say that neither of them has returned in the 11 years it has been since I did the training.

I still use the tools regularly and it is the basis of my continued success in being healthy and happy and creating the life I want for me and my family.

Q. What would be your top tips for someone who has just found out about a chronic/life threatening illness or is struggling with this reality in their life.

Take each day as it comes – every day is an opportunity to better your health. Do not believe everything you are told – even by those who are recognised as being an authority. Seek answers for yourself. Trust that you do know what is best for you and have the courage to voice this. Find those who are willing to support you and accept your judgement as to what is best for your recovery. The journey to wellness is best done with help from others whom you trust. Be open to any options that may help you, you may not get it right the first time and may need several attempts. Keep searching for solutions to your issues.

STORY 5 – Femke (47)

Q. What illness are you suffering from?

In 2019 I was diagnosed with cervical cancer. I did not have any symptoms; it was discovered when I went for a normal check-up (smear test). I have been operated, I had a hysterectomy, and received some treatments. As my type of cancer has a relatively high chance of returning, I am closely monitored, and I need to be tested every 5/6 months.

Q. Would you say you’ve gone through a grief process because of it?

I have been through such a lot of emotions since I have been diagnosed with cancer: disbelief, anger, insecurity, sadness and lately, more and more, acceptance.

For me, anger was my biggest emotion. Why me? I just lost my mum of cancer; my father was diagnosed with cancer again (and passed away from cancer 6 months after my diagnosis) …. I/we didn’t deserve this. I was also angry about having this in another country with different medical approaches and sometimes the struggle with the language. I am Dutch and living in Switzerland.

I was angry with my body – why did it let me down?

I was angry with people who told me that it could have been much worse. I was angry with the people who never asked me how I was doing. I was angry with people who were worried about, in my opinion (!), such a little thing as how to celebrate their birthday. I was angry with people who told me what to do and how to feel and that I should be positive. I was angry with people that acted like my doctor.

Then the tiredness kicked in. I have always been a strong woman and now I was tired of all these emotions, all the thinking and all the anger. It made me sad and insecure – what if the cancer comes back? But also insecure about my own health; with every little change in my body. Mr. Google was my best friend – is this issue I have on the symptom list? And I was insecure about my scars – can I ever wear a bikini again of not?

My Swiss Story: Chronic Illness and Grief

And now I am in a calmer stage. I am accepting more and more that this is part of my life, our life (I have a husband and two kids). I can’t change this situation. It is out of my control. By focussing more on things that I can control I find it easier to deal with this (cancer) cloud that is always above me. Of course, all the emotions are not gone. Especially the time before and after testing are still incredibly stressful for me, but I feel happier and I feel stronger and more relaxed about it.

Having a disease and losing both parents within two years made me realise that life can change (quickly) and it is important to focus on what really counts in life. In the last year, I have made impactful decisions on a private and on a business level that I would never have done before I was diagnosed. And I am very proud of that!

Q. What helped you through this time?

For me it was and is still very important to take “me-time”, to take care of myself. To listen to my emotions and talk with people about it. To go for that walk, say no to an invitation because I don’t feel like it. To go early to bed when I need it. All without feeling guilty.

It was also helpful to realise that people around me really wanted to support me but they didn’t know how to help. They had to deal with their own insecurities and grief. Understanding that everybody does these things in their own way did make it easier for me to understand others’ actions. I became milder in my opinions about others and therefore more kind towards myself. This gave me some piece in my head.

I was basically able to let a lot of the negative energy go. Now I focus more on the things in life that give me energy and things I am in control of.

Q. What would be your top tips for someone who has just found out about a chronic/life threatening illness or is struggling with this reality in their life.

Although there are many good books and articles you can read about grief, I believe everyone deals with illness in their own way. And that is ok. You feel how you feel, you don’t have to feel a certain way. You are unique. Your feelings are unique. That is ok. Listen to your feelings and accept them. There is maybe no beginning and no end. That is also ok. Feel it, go through it, let the ‘I need to feel this’ go.

I did find it useful to talk with my friends and family. Not only about my emotions but also about the medical part. Talking about it is still very therapeutic for me – it helps me to clear my mind, to understand my thoughts and it is good to feel heard. It is also very important to find a good specialist who is really there for you and a GP that understands your insecurities, fear and grief. My specialist and GP are brilliant; they listen and take action whenever needed. No question is too much. Having them around me has given me a huge confident boost.

When you are diagnosed with an illness you will be amazed how many friends and family members have advice for you or know stories about others who have been through a similar situation. This can be very hard on you sometimes as you only want to share your story, or it is unsettling or confusing for you. Let it go. I repeat: LET IT GO. It comes from a good heart; they are worrying about you and sometimes about themselves as well. This is their way of dealing with it. Don’t take it personally.

With so many insecurities around you, it’s easy to get lost in these feelings. Try to concentrate on what you can control instead of what you can’t control. Make a list:of what you CAN do and what makes you happy.

If you feel overwhelmed with emotions, please talk with a professional for more guidance.

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My Swiss Story: Chronic Illness and Grief

A very very big thank you to all of the wonderful women who shared their story to encourage others. Please leave us a comment and don’t hesitate to reach out if you are in need of guidance or support.

Take care! Stay safe!

Are you enjoying our content? We would love to hear your opinions in the comments sections. Stay tuned for more resources, our editorial panel is talking about – summer vacation ideas, mental health, nutrition and wellness, back to school, recipes and activities for children. Stay well and stay with us!

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