Receiving a Lyme diagnosis triggers a mixture of emotions. Firstly, there is the relief that comes with discovering that we are in fact very sick and that illness isn’t in our heads like many doctors make out. Then there is the process of coming to terms with the fact that there is no quick fix or easy solution if you have been undiagnosed or misdiagnosed for years. This can be a bitter pill to swallow.
Suddenly we are plunged into a world that is so alien. Many Lyme patients begin the arduous task of researching, reading and talking to other patients by joining support networks just to try to make sense of the way ahead. It is easy to feel very lost and alone when first embarking on a journey with Lyme. I wanted to ask our Online Community what advice they would give to someone who has just been diagnosed with the disease in the hope of uncovering some pearls of wisdom for new members:
‘It’s a marathon not a sprint. Don’t put anything on hold, fully enjoy whatever you can, whenever you can, even whilst on treatment.’
‘Move heaven and earth to make sure you do all you can treatment-wise whilst you still have the energy to fight for yourself and before you become too incapacitated.’
‘Try to get your GP onside and give them simple information from Public Health England and NICE plus LDUK leaflets. If you are referred to an Infectious Diseases specialist, then make sure you bring the same information and have someone there with you to back you up. Putting all my faith in the NHS was my biggest mistake.’
‘For those who’ve just been bitten – check the NICE guideline to make sure you’re on the recommended course of antibiotics as your doctor may not be aware of the treatment you are entitled to. For chronic cases – don’t panic and take time to inform yourself.’
‘Keep positive at all times, try to be in tune with your body and listen to it.’
‘Join a Lyme support group and don’t be afraid to ask what you may think are ridiculous questions. Someone will know the answer and be able to offer support. It’s a frightening experience and you need people who understand you.’
‘Be prepared for a rollercoaster ride of physical and emotional symptoms for many months. Find a treatment plan that works for you and stick to it rigidly. Stay strong, stay focused, stay positive and good health will eventually come your way!’
‘Educate yourself on the literature on Lyme disease.’
‘Whatever happens is real, you are not losing your mind. Be strong, be confident, be kind to yourself and learn to love green smoothies!’
‘If it’s a chronic case, don’t rush. Take your time to consider all of your options and trust your intuition as to what is right for you.’
‘If ‘conventional’ doctors are not helping, find your own way. It’s your life, your body and no-one can care about it more than you.’
‘Don’t waste energy on those who don’t want to try to understand what you’re going through. Your main priority is being self-aware and concentrating on what helps you. Don’t surround yourself with those who are making you feel worse.’
‘Don’t expect the NHS to do anything to help you and prepare yourself for people not to understand how ill you are because you seem to look normal.’
‘Always have hope. Find people who have got better and look into their recovery path. If you then decide to use that pathway, use them as your mentors / encouragers. I’ve found that everyone who has come through Lyme is very happy to help others and is very generous with their time. I have three people like this I have connected with online and I know I can phone or message each of them at any time. They gave me so much hope when life was dark and enabled me to believe I could get better and I have! I am so thankful to them. Also do everything you can to support your immune system and make it strong. Investigate treatments that you might not fully understand but that others have had success with – in particular bioreasonance, biomagnetism and herbs’
I think my personal advice would be trust yourself, don’t rush and don’t pin all of your hope on the medical professionals who try to treat you. The years of misdiagnosis that many experience proves just how far behind some medical professionals are when it comes to Lyme disease. It is usually down to us to save ourselves which is a very overwhelming thought and task, especially when we feel so poorly. It is important to accept that there isn’t a quick fix and we can’t just sleep it off or pop a pill. We must monitor our health carefully and take each day as it comes.
I really do believe that keeping a positive mindset is key and practising gratitude can really help with this. There is no doubt about it, Lyme disease affects our whole lives, bodies and souls. Our lives become restricted BUT there are so many things we no longer take for granted. We appreciate everything so much more and this means there is more to celebrate. A diagnosis is not all bad. We make new friends for life from the support networks we join, we learn more about ourselves and our bodies and we value life so much more as we have been faced with the prospect of losing it.
Joining an Online Community like Lyme Disease UK is vital. Loneliness is the biggest killer and this disease can make you feel so very lost and alone. To know and see that there are many also suffering similar symptoms is comforting as you stop doubting your sanity. Often people may say that the kindness, support and love they receive from fellow members brings them more pain relief than any of their medication. It’s true; love is the most powerful drug there is so please join us and don’t feel scared or ashamed about expressing your pain and suffering. You won’t be alone and so many will thank you for speaking up because maybe they were too scared to themselves.
Through our journeys, we all make mistakes and learn from them and therefore we find the strength to speak up. Sharing experiences, victories and failures is equally important. We all know how hard it is battling this disease day in, day out and so if we can help soothe fellow sufferers’ pain, it helps us feel useful. You know your body and you know YOU. Soak up other people’s experiences and journeys and use them as lessons and advice for you own. We must keep in mind that we are all UNIQUE and what works for someone, may not work for you. To all of our new members WELCOME, make yourselves at home and make new friends. To all our existing members, thank you for being so brave and for sharing your words of wisdom.