Advice You Would Give To Friends & Family Who Doubt Your Illness


This is a tough cookie of a question. It pulls on the heartstrings and it can open up some raw wounds. Thank you to everyone who found the courage to share your experiences and respond to this question. I fully understand how hard it is to answer.

In a study carried out by the NHS in October 2018, it was found that in the UK, 28 million adults in the UK are affected by some type of chronic pain (pain that lasts for more than three months). The researchers used data from 19 studies that included almost 140,000 adults.’  With so many people suffering, why do there still seem to be doubters?

No matter where we go or who we socialise with, there are always judgments flying around. Personally, I deal with this problem on daily basis and sadly, it seems to become a staple in the lives of the chronically ill. The only way to conquer and feel at peace is to accept, adapt and learn ways of dealing these negative emotions that hinder our overall well-being. So, how do we deal with these doubts?  Here is what YOU, LDUK’s Online Community, had to say:

‘Advice for how to deal with your friends/family who are doubters: AVOID! It takes so much energy to live a semi-normal life, it takes energy you don’t have to pretend and try to explain. Accept that your circle of friends and family who can accept your illness will be small and enjoy them. You cannot explain the unexplainable.’

‘I don’t mix with people. They don’t acknowledge am in the room when people, not friends pop into my home. They just talk about other things. I only have my partner, and everyone has just walked away from me. If anything happens to him, I know what I must do. I was a giver and a compassionate person I couldn’t care less about ant thing anymore. My mood remains flat and I am scared for my future. I don’t give a toss about who my friends were. It totally drains me. I would like to socialise, but I don’t have the energy or strength.’

‘Try to remember that most people are more scared than uncaring. They don’t want to know that this random hideous disease can suddenly infect your life and change it in random cruel and sometimes very severe ways for months, years, maybe forever. And there is not much anyone can do about it. No quick fix. No lifestyle changes. They would rather this was not a real thing. To achieve this, they subconsciously “other” us and blame us for our misfortune in such a way that it precludes it ever happening to them. Many if not most people use this defence mechanism at some point when we cannot bear to tolerate painful and scary realities – from global warming to the plight of refugees to the horrors of Lyme disease.’

‘Many of my patients have said that there is a world of the sick that is totally separate to the world of the well. They did not volunteer for the transfer any more than we did. And we cannot demand that the current Well World people make the transfer either. To empathise with us fully would require too much that they do not see and do not want to see. So, I guess that leaves us doing most of the work in bridging those worlds, just when we do not feel capable of much work at all. Nobody ever said it was fair, but I prefer to keep trying to stay connected with corners of Well World and to be as content as I can when Sick World has to be my home.’

‘Trust yourself, protect yourself, and take comfort in those who aren’t judging or doubting you, where you can. Then, if and only if you have the strength, forgive the ignorant stupidity of those doubting you if you want or need to keep them in your life; or grieve the loss and let go if you don’t.’

‘I was first diagnosed with Chronic Fatigue Syndrome 27 years ago and have known the isolation and loneliness chronic illness can bring. At the times in my life when I have struggled the most with my health and needed to know there are people around me who understand and be there for me, I’ve felt the most isolated.’

‘I have experienced many emotions and feelings along the way From anger and resentment to pretending not to care and instead, creating a strong and brave exterior. I have also numbed for many years. What I have learned is that none of these serve me on my healing journey.’

‘Where I am today is trying to work on myself by building my inner love and self-belief in my path and purpose. Expressing gratitude for what I have, that this is my path and that I must take from it what I can to learn and be grateful to have the opportunity to grow myself. It is a challenging path and at times painful, but I try and learn from others who can help guide and offer support. I have recently read much of Brene Browns work and look to spiritual Guides like Eckharte Tolle and am beginning to find peace where the thoughts of others really do not matter.’

‘I believe living with chronic illness is hard to understand for anyone who hasn’t experienced it. In the case of Lyme where there’s little awareness and symptoms are not understood I’m sure it’s even harder. Ultimately, I don’t believe its people are uncaring. Probably more that we are all more absorbed with our own needs and personal happiness.’

‘Meditation, good diet and self-care, self-love so that you are strong enough to ignore all of the ignorant know-it-alls.’

‘I am not allowed to use the word Lyme with my family, so I have isolated myself from them.’

Evidently, chronic illness is so isolating. We do lose friends, family and peers who don’t seem to understand or want to understand, or they simply doubt us. At first, it hurts, really hurts. We are only human, of course, we are allowed to feel angry and hurt by these kinds of situations. I think when it comes to dealing with a health issue over a period of time. we pick up vital lessons from these kinds of hurtful situations. We must, unfortunately, go through the pain and heartache to learn the lesson and rewire our brains a little. This is by no means an easy task and it doesn’t happen overnight, but with time effort and a little love pointed at yourself, you reach a better understanding and allow yourself to be a little more at peace.

We all want people to be happy, live their best lives and if possible, not have to feel pain. Often when people hurt us, doubt us, question us or worse, run a mile, we feel angry, upset and hurt. It is easy to feel hatred towards the people we truly love deep down. We must also remember that the love that we give out should also be given back to ourselves too. After all, that is what other people are doing. By putting up their walls they are protecting themselves, protecting number one. This can come across as mean-spirited, cruel and selfish but there is something to be learned from others thinking of themselves. I am by no means saying become a cruel, closed-off person who doesn’t care about others. I am simply saying we need to become protective of our own hearts and water our own gardens to encourage personal growth.

Life is a never-ending lesson and everyone who comes in and out of our lives does so for a reason. Despite promises and people seemingly leaving prematurely, it must all happen for a reason. For us to learn from them, learn from the hurt they caused, learn from the actions they took and learn from the questions and doubts they leave in our own minds. The lesson pushes us into valuing our main supports over ‘part-timers’ who flicker in and out of our lives or the people who choose to leave in our hour of need. We practise gratitude far more because we begin to realise how lucky we are to have amazing people in our lives who stick by us and who we can make special memories with. We gain respect for ourselves and realise that we NEED and DESERVE love just as much as a well person. We must put ourselves first and give ourselves time for rest and recovery. We must allow ourselves to say no and cancel plans without feeling guilty because we NEED to for the sake of our health. The people who matter and deserve to stay in your life will ALWAYS understand.

No matter how alone we feel, we aren’t alone. We are a community of warriors. We understand because we go through the same pain, the same hurt, the same issues, the same lessons and the same problems. Our advice to one another is golden because it really does help us on our own journey as we try to navigate what seems to be a never-ending dark maze. Remember, that this is your life too. You only get ONE shot at it. Even though we carry so much hurt, sadness and pain we can’t allow it to keep taking from our own lives. Our lives are full of hurt and pain without the added extras. Like skin, sometimes you must shed a layer. To enter a new chapter, to grow and blossom.

Be strong and let go of the negative energies that are pulling you down and focus on the positives. Believe me, there are also lots to be found. We often have to dig a lot deeper than surface level to uncover the hidden gems and treasures but be sure to know that they are there. If you are struggling to know where to begin on your healing journey and how to deal with the doubters, my advice is to stick with your main supports, who will be rooting for you. The more confidence you gain with their backing, the stronger you will feel in your own skin to eventually be able to handle yourself and not feel embarrassed or intimidated by those who are not in your corner. Listen to your supporters’ feedback over feedback that comes from people who throw negativity at you and walk away. Your main support team will always shower you with love, advice, kindness and motivation. Listen. Let those comments outshine and dampen any doubters.

With time and commitment to this exercise, you will begin not allowing the the negatives to affect you. There is always LDUK’s Online Community as a  massive support hub as well, full of thousands of warriors dealing with the same situations, hurt, pain and lessons. Please, be encouraged to share your story and ask for advice. Your story will help others relate and to open up. People will always jump to help, offering all of their wisdom.

I know when we lose people or feel people have let us down, we instantly blame ourselves. Which gets us into boiling hot water. Why? Guilt and blame are so very toxic, especially when someone is already overwhelmed, and feeling trapped and lost. You must learn the lesson of finding peace, but you aren’t to blame. I want to add some links to support below for anyone who feels they need a little extra or simply someone to talk to. Never feel ashamed and just pick up the phone. A call and some advice could really change your outlook on what feels like an awful situation in which your world is falling down around you.

Samaritans offer a 24-hours a day, 7 days a week support service. Call them FREE on 116 123. You can also email jo@samaritans.org.

Papyrus is a dedicated service for young people up to the age of 35 who are worried about how they are feeling or anyone concerned about a young person. You can call the HOPElineUK number on 0800 068 4141, you can text 07786 209697 or email pat@papyrus-uk.org.

NHS Choices: 24-hour national helpline providing health advice and information. Call them free on 111. C.A.L.M.: National helpline for men to talk about any issues they are feeling. Call 0800 58 58 58.

Here are also some great meditation and mindfulness apps that may help you to have some well deserves ‘me’ time. You can search for them online and in the App store on your mobile device.

Headspace

‘Designed to help you train your mind and body for a healthier, happier life and get the most out of your day, Headspace can be used anywhere. The free version of the app includes meditations and exercises led by Headspace co-founder Andy Puddicombe that will teach you the essentials of meditation and mindfulness.

Named an ‘Independent Best Buy’ and featured on The Ellen Show and The Tonight Show starring Jimmy Fallon, a recent Headspace user review states: “After a few days with guided meditations I could really notice a difference in my way of handling stressful moments.”

Calm

‘Described by a user as “a truly life-changing app”.

The short, guided meditation sessions cover the basics of mindfulness and there’s also a library of soothing nature sounds and scenes to use at your leisure. One great feature if you’re looking to improve your sleeping patterns is the ‘Sleep Stories’ – bedtime stories for adults ‘guaranteed to lull you to sleep.’

Aura

‘If you’re after a personalised meditation experience, Aura could be the app for you. Described as a ‘new kind of mindfulness app’, Aura learns about you by asking questions. You then receive a daily three-minute mindfulness meditation based on your answers.’

Stop, Breathe & Think

‘Another app offering a personalised meditation and mindfulness experience is Stop, Breathe & Think. According to Cosmopolitan, this app has ‘stand out’ customisation tools that deliver meditations based on your current emotions and feelings.

A recent study saw a 22% decrease in users feeling anxious after just 10 short sessions. Winner of the 2017 Webby People’s Voice Award for Best Health App, a current app user described Stop, Breathe & Think as a “great app to begin a new meditation practice or strengthen an existing one.”

Insight Timer

‘Described by the Independent as “a social network for meditators”, Insight Timer lets you share and discuss your mindfulness experience with like-minded people around the globe. Community groups include Beginners, Transcendental Meditation and much more, plus there’s a packed library of guided meditations led by the world’s top mindfulness experts and meditation teachers.

Winner of TIME magazine’s Apps of the Year, a recent user had this to say: “Fantastic app! Helped me get back on track with meditation. Huge variety of meditations, talks & support.”

Never feel alone and even if you feel you lack support around you, you can always find support through helplines, support groups and with fellow Lyme warriors who are going through the same. I hope you find this blog post comforting, helpful and I truly hope it can help the healing process, in finding a little more peace.

Thank you,

Sophie Ward.