Why I feel guilty about my Lupus diagnosis

Over the past few months I’ve got very used to being asked how I’m feeling. How I’m feeling physically, how my symptoms are manifesting themselves, how I’m responding to treatment, how I’m feeling emotionally. So what’s the answer? Well, Lupus has made me feel a range of things. Being told I had Lymphoma was the most terrifying thing I have ever been through and I’ve never felt fear like it. Clearly Lupus has made me feel really, really poorly but I have also felt so much love for and from the people around me. I’ve felt pain I’ve never experienced before. I’ve felt relieved that I finally have answers for what’s been happening to my body over the past 18 months. I feel tired, sick and frustrated, but I do feel as though I’m slowly getting better. I feel positive and excited for the future. But I also feel extremely guilty and here’s why.

1. I feel guilty about all the things Lupus took from us – Henry and I were on the trip of a lifetime and to make it a reality had taken years of planning and saving. The leg of South America was the part we were the most excited about as it involved lots of trekking and culminated with spending three full weeks with our amazing friends in Brazil whom we don’t get to see very often. We were both devastated to cut our trip short and I will always feel guilty knowing I was the cause. It’s not just our trip that Lupus took though. My mum was due to fly to Peru to join us for the Inca Trail to celebrate her 60th birthday and retirement. Then the three of us were due to fly to Bogota to meet my best friend and spend two weeks travelling around Colombia. For both of them it was their first time in South America, a trip of a lifetime to join us on our travels. Lupus took this from them too and I feel guilty for their disappointment, their stress at claiming on insurance, their worry. And our friends in Brazil – guilt for their disappointment, the plans they had to cancel, their worry at being on the other side of the world.
2. I feel guilty for the demands Lupus has put on others – I mentioned my Mum recently retired. Well, what a fun start to retirement she has had! Instead of celebrating this momentous hard-earned and extremely well-deserved life event by hiking the Inca Trail and backpacking Colombia, she has spent the first months of retirement back and forth to Addenbrooke’s hospital more times than she ever has been in her entire adult life living in Cambridge. Henry has gone back to our flat and work, and is driving a four-hour round trip each weekend to see me. They have had to deal with me at rock bottom, unable to move or do anything for myself, screaming in agony at the slightest movement. They are both also doing so much for the wedding, taking as much from my plate as possible. There is no doubt the strain on them both has been huge and it’s so hard to witness knowing I am the cause.
3. I feel guilty for all the worry I have caused – Unexpectedly and suddenly being diagnosed with Lymphoma on the other side of the world inevitably caused a lot of worry for my family and friends, as well as for us. Then came weeks of tests, not knowing whether the diagnosis would be confirmed in the UK. I was so lucky to receive a misdiagnosis but then came weeks of not knowing what was wrong. Waiting for hospital appointments while my condition deteriorated rapidly. I could see how worried everyone was but I couldn’t control what was happening to me. Then we got to crisis point and I was seriously ill in hospital and I could see how worried everyone was, we had reason to worry. Then there’s my family that don’t live close by, they were worried, wanting to know every update and every bit of progress. I can see the worry and feel the worry I have caused but I can’t do anything to make it go away. The only thing that will stop them worrying is if I get better and go back to being ‘me’. Believe me, I’m trying.
4. I feel guilty because I’m no fun to be around – I can’t do fun things and I get really tired really quickly. I feel guilty when people come to visit me that I can’t hold much of a conversation without zoning out and getting really sleepy. I’m on strong medication with horrible side effects which is my excuse for being grumpy, frustrated, short-tempered etc. I try really not to be because it’s already hard enough for my nearest and dearest but sometimes it’s impossible to control.
5. I feel guilty for not being productive, active or busy – I was usually someone running around at 100mph with every minute of spare time crammed with activity. I had to always be ‘productive’, making the most of every second. Now a productive day is getting showered and dressed. Sometimes I manage some stretches or preparing a meal. I don’t always manage them all and some days I don’t manage any. My body and mind are mostly inactive but I have a To-do list as long as my arm. I think culturally we put a lot of value on being productive and busy and I’m starting to realise it’s a false narrative. In order to give your time and presence fully to others, you have to take time to give yourself what you need, to rest, heal and thrive. It takes a lot of re-learning but it’s especially true when you have a chronic illness. I am trying so hard to simply get up each day without any expectation and pressure on what I will ‘achieve’ and instead, listen to what my body needs in the present moment whether that be food, tea, a bath, a walk, or just to be resting and doing nothing.
6. I feel guilty for not being at work – I love my job and I was really looking forward to going back to work. I had already been on a sabbatical for our trip and I feel really guilty for not being able to return as planned. Work has been really supportive and kind, and I know I’m no use to anyone in my current state, but I can’t help but feel guilty for any added stress my extended absence has caused.
7. I feel guilty for being flakey – honestly, the only commitment I can make right now is to our wedding. Being well for that is our main focus and I just want to be able to enjoy the day. Even if I am ‘well’ by then, there’s no denying that the build up to and the day itself are going to be really demanding and tiring for me. That means I can’t commit to doing anything that isn’t absolutely essential (like dress fittings!) in the build up to the wedding that could jeopardize my health on the day. I feel selfish for putting myself first or saying no to things, and worry that this makes me a really boring person.

I don’t mean to sound doom and gloom, and I am positive about the progress I am making, even if it feels slow and inconsistent. It’s just been quite surprising to me that guilt has been an overwhelming emotion in my experience of Lupus so far. Deep down I know that having Lupus is out of my control. I didn’t do this on purpose and I’m doing everything I can to get better. But it’s just how I feel and sometimes I can’t fight it. Does it come as surprise to you? Anyone else out there experiencing the same thing and how do you deal with it? How can we learn to let go of guilt and focus on being in our best possible health? As ever, any tips always very welcome!