This is a very hard and emotional question for many people to answer but we wanted to get a sense of how people’s relationships in our Online Community are affected. Many people feel a great sense of loss as those who were once so dear to us simply can’t or don’t want to accept our complicated health problems.
A lot of the feedback and stories from members are truly heart-breaking and really showcase the range of reactions loved ones can have to chronic illness. There are also some uplifting and positive stories of love that has grown and bonds which have strengthened, enabling self-worth to remain and grow despite the hardship.
Our illness can taint our vision of ourselves in the most soul-destroying way. Confidence levels tend to drop and sufferers are left questioning if they ‘deserve’ the pleasures in life; namely love and friendship. When we can barely work, struggle to function, can’t meet up with friends and can’t manage a home or look after children, it is easy to question why we deserve any love in our lives. It is very easy to fall into the trap of focusing on what we don’t have, can’t do and what we miss out on and therefore we forget all the wonderful things that we can still bring to the world. We deserve life’s pleasures just as much as those who aren’t suffering from Lyme disease.
We may not be top class athletes, world travellers or party animals at the moment but on good days, some of us may still be able to enjoy light exercise, travel locally and enjoy a meal out with friends.
We are conditioned by society and the media to believe that there is a certain criteria for success, happiness and self-worth and it is easy to buy into the story of how life ‘should be’. This can leave many people feeling very depressed and lead to black and white thinking where people see life as either a total success or as a total failure. This can lead to a breakdown in many friendships and relationships. Our illness becomes the punch-bag which we blame and which other people in our lives blame as well. Some people lack the experience, knowledge and heart to realise that what may be perceived as failures can be some of life’s biggest lessons and we can use them to grow and develop, like stepping-stones.
We all experience both ends of the spectrum. For some, when they reach a hurdle, they simply aren’t prepared to jump. They expect the hurdle to be removed so that they can continue their journey without any ‘blips.’ This can manifest itself as loved ones walking out of our lives when the going gets tough as they do not believe they deserve to face the pain of watching us suffer. The truth is, all of us have to face pain in some shape or form and at some point in our lives and nobody is immune to it.
Those of us in the Lyme community face pain and hardship every day but out of the heartache has sprung some very deep and loyal friendships. We have no choice but to adapt and face our situation head on. It is important to reflect on our own behaviour as we try to come to terms with this alien situation. Sometimes we are guilty of lashing out, going through mood swings and pushing people away as a defence mechanism. However, over time, we come to appreciate the people who stick around and who show us unconditional love and support. We then question whether those who are unable to be there for us actually deserve a place in our lives.
Losing those people who we thought would be there for us is a grieving process and it can be easy to forget the heroes who have remained faithfully by our side. It is so important to show gratitude towards those who are loyal supporters. This in turn helps us to cherish the moments and memories with the ones who really do love us. We realise that although we feel such pain and anger towards those who have abandoned us, they simply aren’t worth our time and energy.
Here are some experience shared by some of our brave Community members:
‘I felt so lost when my husband was ill and I fought non-stop to find out what was the matter with him. I had never heard of Lyme disease but when he got facial palsy, a young Irish doctor asked him if he had been to the New Forest (this was a month after we had been to our son’s house in Brockenhurst). So, he did the first blood test, telling us it would be negative, but that it had to be repeated after 6-8 weeks. We spent 7 months trying to get that repeat blood test. He went through every department at the hospital, sometimes being admitted with so much pain that he was administered morphine and diazepam. He can’t remember much of this time as he was in a haze of pain, medication and bacterial meningitis. The hospital denied there had even been a first blood test, until he got an appointment in the neurology department. The young doctor said he would do the test and within 48 hours, my husband was recalled for a brain MRI and lumbar puncture. He was so ill and I thought he was dying. He had lost 20kgs in weight and he was so weak he could hardly stand up. All I can say is, keep fighting, believe in the person you love and help them through it.’
‘I have been so lucky. My husband, who married a fit, healthy, fun-loving wife who did everything with him, most certainly did not sign up for any of this. But he has stuck by me and been such a support. My mam and dad have been so great too. But there is certainly a grieving process for the relationships we used to have with each other and for the person I was. My poor kids must see their mammy struggling every day but never did any of my family doubt or question my illness. Again, I am very lucky as I haven’t lost friends but I have lost the ability to meet up with them. Thank goodness for Facebook which does allow me to keep up with everyone. There’s also the guilt that I am the one causing so much pain, worry and change in the lives of those I love. However, a therapist helped me see that allowing the guilt to take over casts a cloud over the house. Trying to just be there and smile and listen to my children has made all our lives a bit brighter.’
‘My hubby developed ‘Man Ostrich syndrome’ as he buried his head in his work. I hardly saw him and this is how he tends to deal with anything that doesn’t go his way. My true friends, including the lovely Karen Kirstin and a few others stood by me, laughed with me and also cried with me. They were my rocks when I needed support. Most of my family just didn’t get it; only my mum and dad. The ‘Mothership’ lives 3 hours away by car and she’s in a wheelchair but she used to come and help me with my housework and attend my hospital appointments when I needed her to. When it comes to my little girl, I have had times when I couldn’t speak or when I’ve had the attention span of a gnat which has made it very difficult to parent, especially when my hubby was working all the time. Thankfully she started nursery school and now knows that if Mummy says she’s poorly, it’s a ‘duvet day’.
‘Lyme disease has weakened some relationships and strengthened others. Most people just don’t get it, but they’re still around. It has affected my relationship with my parents and family. I feel let down and a sense of abandonment because they spent most of the last 8 years siding with doctors, telling me everything was fine when it wasn’t. All I wanted was for people to recognise how sick I was, but I was met with disbelief. Some people have surprised me, people I wasn’t really that close to but who reached out. I have realised that my parents aren’t equipped to deal with this, I don’t hold it against them, but it has taught be a thing or two about independence, and ultimately that’s a good thing. I have just had to learn the lesson a little earlier than most. It also taught me not to expect so much from people and to recognise that most people do their best. I am grateful for everyone including my parents and grandparents who despite not “getting it”, tried their best and supported me financially and put a roof over my head. Meeting new people is hard and romantic relationships are non-existent. Even among close friends and family I don’t feel as if I am truly close to many as I don’t have the energy to invest and therefore I feel like I’ve had to sacrifice many people in my life. In turn, I feel I have been forgotten by a few, as I am unable to contribute meaningfully to their lives.’
‘For a year I pushed through tried to keep up with everyone around me and when I’d say I was ill, friends wouldn’t take it on board. The more I’d say ‘no’ to doing things, the less I’d get asked. I have some good friends who keep in touch and take me out for lunch but then I have friends who have grown apart, got married and had kids. I don’t think some even know I’m ill but I’m OK with that. I don’t really understand it, so I don’t expect anyone else to. I am lucky to have a supportive mum and I don’t know where I would be without her. I’ve always made an effort to play with my nephew and it helps to distract me but some days it’s been a push to get out of bed and he doesn’t really understand. At this point, it’s hard to keep up with people.’
‘My partner has been treated appallingly by people since she became ill. The worst of all are her family, who will not do anything to help her but have offered to pay for a one-way trip to Dignitas as apparently that would “make things right for the family”. With family like that, who needs enemies.’
‘I find it so painful to articulate the relationships lost to this awful disease and the stigma and social isolation it forces on us. I am so grateful to live at a time when it’s possible to have an online social life as I cannot imagine what it would have been like without one when I was too sick to leave the house. We relocated with children just about to start school when my health crashed. I found it very hard to make new friends as I felt like people would think I was just looking for help with the kids and couldn’t really offer much by reciprocating with playdates and meeting up. The few friends that I’ve found in my real life and online social circle are salt of the earth kind of people who see past my illness and my inability to plan, to go out for drinks etc. I doubt I would have found them or them me, if I was well. That is my silver lining.’
‘I have lost much; some ‘friends’ my long-term boyfriend and my career. I can’t do all the things I want and dreamed of doing, I feel stripped of nearly everything and cheated. Fortunately for me, I have the most supportive and understanding parents I could ever have hoped for and even though they’re in their 70s, they do so much for me – an incredible amount. They have just paid for me to get private testing done and I’m having my blood taken next week. Also, on the positive side, not being able to work full-time any more has enabled me to get a dog. My pup has been with me a year now and is my best friend. He has shown me a different and more relaxing side of life. I wouldn’t swap that for anything and I try my best to focus on that when I can. I have such low days sometimes, especially on the days when my health is at its worst, but I believe I will get better one day.’
‘I have my partner and my daughter and a few close friends. Life-long family problems made me go ‘no contact’ with my mum and as a result I’ve lost my siblings. I find this hardest of all especially around special occasions like birthdays and Christmas. Thankfully I’m of the mindset that it’s quality, not quantity of people in our lives which matter. I’m grateful for the friendships I’ve made within this community and for the unwavering support and kindness I’ve received here. I am thankful for you all.’
‘One positive thing for me is that I’m back to being a stay-at-home mother again (due to my Lyme) so I am there a lot more for my children again. I’m lucky as most people around me have been very supportive and have tried their best. When I was really poorly I focused more on online friendships as I couldn’t go out. I became closer again with some old friends who live abroad. One of my friends was going through an acrimonious divorce so we were supporting each other. I also had more time to blog (on a non-Lyme site). I did mention my illness but tried to keep talking about usual things so as not to let Lyme take over my life completely. I cherish those friendships I’ve made via my blog. I suppose when you’re bedridden you need to be a little more creative in terms of where you get your support/ social side of things so as not to become totally isolated. Of course, I had loads of days I wasn’t able to communicate in any way but on my better days the online community provided me with welcome distraction and support (even if Lyme was not discussed).’
‘I hardly have any contact now with my brothers and sisters who, apart from my son, are my only family. They have never believed I have Lyme and do not believe the extent of my symptoms. The worst thing is that they have said some really hurtful things when I have cried out for support. I don’t see friends any more because I’m so ill and they hardly ever bother either which is so sad. I have a beautiful son and fortunately, he understands and helps me – he is my angel. I also have some valued friends from online groups who I have never met in person who have demonstrated more compassion and support than my doctors or peers. This is such a painful, horrific and lonely disease. Not only do we fight to stay alive but we also lose love, our money goes down the drain and we fight and worry as to how to survive all alone’
After seeing people bravely sharing their experiences, I felt it was only right that I too answered the question:
‘I have pushed away everyone close to me. They have interpreted it as me being cold and uncaring when I have done it to protect them. I don’t want to hurt anyone or affect their lives. I have lost my closest childhood friend and the only man I have ever loved to this date. It has crushed me it rips me apart every day. Both of them now live their new lives with their partners. I would do EVERYTHING for them and they simply didn’t want to support me. I almost feel a fool when I think that I might be dying and long for these people to be by my side. However, I know they don’t even think about me; they just continue living their lives. It also makes new relationships hard because I can’t be the fun, outgoing 24-year-old woman who a man would look for in a partner. Nobody wants to be ‘tied’ down to someone with health issues, especially in their 20s. I watch my friends get married, have children and falling in love and I just feel heartbroken and lost.
I am SO incredibly lucky though. I have made some amazing, inspiring and devoted friends through this Community and my health issues have strengthened relationships within the family unit because we have become far more grateful for our memories, love and time together. We make time for one another and really cherish it. It’s times like these when we learn the harsh lesson of who our true friends and soul-mates are. The heartache and loss we feel is often worse than some of the symptoms we experience. I must keep hope that one day my personality, work ethic and my sense of ME and who I am, will be enough for someone to love and support me through thick and thin. I know I am still young at 24 but we all dream of having a rock in our lives to make memories with and we all know that love is the best dose of medicine.
As sufferers, we forget it’s not all about the disease, but it affects all aspects of our lives and nothing is ever straight forward BUT the positive is, we become stronger people and when we do build relationships and friendships we are far more respected, because we’re grateful for loyalty. So many treat these traits as a given not a gift. Like many in our community, I sit here heartbroken and mourn the losses even if I come across as ultra-positive and happy-go-lucky. I just feel it’s important to keep highlighting the positives because I strongly believe in the Law of Attraction and focusing on the positives can really improve your quality of life and overall well-being. We keep fighting every day and if we keep a heart of gold and keep acting with kindness, others can’t ask any more of us. A final word must go out to my Mum, who is my partner in crime and soul-sister, we have a bond that NOTHING could affect, and I am SO, SO grateful for all that she does for me, the support and love she gives me through thick and thin and our strong friendship. She is my life. I am so lucky.
I hope this blog post gives you hope, helps you see your real strength and most importantly appreciate the amazing relationships and friendships that we have retained and created on our journeys. Don’t forget to join our Online Community where you can find support if you haven’t done so already.
Sophie Ward.