I have had FL for over a year and since then, my best friend has changed. She told everyone she knows about my diagnosis and I feel it’s mostly to get attention (I’ve had strangers coming to me looking at me with puppy eyes and head on the side asking me how I feel or making comments like “she so wishes you lived closer” or “she cares so much”…). The thing is, I don’t believe it.
We have been friends for years but I struggle with all her comments making out that she is so worried for me, and should I be in the sun, etc… the more I hear, the more I want to have less contact.
I’m lucky I don’t really have any symptoms other than tiredness so being made to feel like an invalid makes me want to push back (especially as I still work full time and my friend doesn’t work at all). It also makes me feel like my I’ve lost my best friend.
When we are together, she makes comments like “god forbids you should do anything fun” like she resents that I am less fun that I used to be? (Going to bed early, not inviting them for diner anymore as just the thought of cooking a big meal makes me tired…).
At the same time, I don’t know if it’s because I’m trying to isolate myself as a coping mechanism.
What are your thoughts? Am I imagining things?
Have you experienced any similar situations?
Hi Chris2601 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your challenges.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)
Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I have not had to deal with these types of challenges but it is actually not that usually….. some people just don’t know how to deal when family and friends get a cancer diagnosis….. and can be over protective.
Your Low-grade non-Hodgkin lymphoma like my first type of NHL are seen be seen in the same light as life long incurable chronic illnesses….. my CNS said look at it being the same as having diabetes….. but the main difference is folks with diabetes are on treatment for life and if things go wrong they go wrong quickly….. low-grade NHLs are not like this and are only treated as and when required.
I continued to work for the first 12 years after my diagnosis in a demanding Further Education teaching job and it took a further 2 years before I needed full treatment……. So I/we basically lived a normal life.. went out, theatre, holidays….. normal life things.
Regardless as to what others say you should be doing this is all up to you…… it’s you that is navigating this unwanted journey.
Sorry my reply is not that helpful but happy to chat more.
Are you in the UK?
Generally living with a chronic condition is tiring and low-grade NHLs like FL fits that bill.
You may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… as these groups will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.
They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
