What to expect from others during a potential diagnosis?

[millie123]

What to expect from others during diagnosis?

Hi everyone,

I posted a little while ago, I’m still awaiting diagnosis. Have my first neurologist appointment in a few days… to say I’m nervous is an understatement.

In saying all of that, as you’ll all likely know; this limbo time has been one of THE hardest things I’ve been through (and trust me, my life is like a textbook of trauma.) Previously I’ve dealt with things alone… clearly that’s not helped my stress and inflammation.

However.. I’m feeling really let down by my family and friends. Only 2 friends have regularly asked how I’m doing, asked to catch up. I am VERY grateful to these friends. The rest of my friends (including my supposed best friend) have given radio silence.

My family don’t want to talk about it, and when they do it’s about how they’re feeling about it, how it’s affecting them. Which I’m finding infuriating but not as bad as my best friend who has barely said anything (at all) to me in weeks. i know she is going through her own stuff, and has said she is struggling with loneliness and her mental health… but I am so disappointed. If the roles were reversed, I would be making much more of an effort to check in with her regularly.

My whole friend group has disappointed me in general, but with us, we are supposed to be like the “sisters” we’ve never had. I was really hoping I could lean on her, talk about how scary this is, how frustrating my family are etc…

The reality is, I’m not messaging her because I think she should be messaging me, and she knows that I’m the kind of person that doesn’t need much but I do appreciate a thought and small gesture, she knows this.. yet sends nothing.

My question is.. how much is too much to ask of others during a time like this? Should I let her know that I’m mad at her for not making an effort… (she’ll know), or do I just leave it all and see if she messages me?

Everyone has stuff going on all of the time, just this right now feels SO BIG. How much should we expect from those closest to us?

[jthatcher]

Hi Millie, sorry to hear that you’re finding things difficult at the moment. The limbo period is a bit of a trudge but, it will move forward in time

… your upcoming appointment is a good thing. Try to relax and just get in there when they want you.

Your friends and family may be just trying to give you some space at the moment while you have this going on.

Maybe try sending your best friend a quick message to ask how she’s doing. It may spark a conversation and break a cycle.

Good luck mate x

Jon.

PS - how are you doing?

[busybroccoli]

Hoping your appointment goes well!! Is there anything you’d like to know about whats happens in first appointment to try and ease your mind?

I don’t think there is any set way for others to react to this kind of thing. As Jon mentions maybe they are trying to give you some space.

When some people don’t know what to say, they find it best to say nothing. Sometimes if people find things hard to relate, even when they care so much about you, it can make it tricky to know what to say and whats appropriate.

Sending all the positive vibes your way!

[Hank_Dogs]

Hi @millie123 apologies if this doesn’t answer your question about how much to expect from others but I think that with MS and indeed any other serious chronic conditions the important thing is learning to love yourself and care for yourself like you would a child . When we are scared we can revert to basic childhood feelings and fears and it becomes important to talk to and reassure the child in you. I often ask myself ’ what would I say to the young me’?

Sorry to say that MS can be a long and lonely journey! None of us know what each other is going through emotionally, mentally and physically and we have to learn to be our own best friend and support.

Sorry to say as well, that by and large and in general, people don’t know how to relate to those who are struggling and that there is something in our basic human nature that makes us stand back a bit from anything we don’t know how to deal with/ anything a little scary.

My thoughts, sent with kindness, are that for the time being don’t worry about what friends etc might or might not think and say, instead concentrate on yourself and loving yourself!

many apologies if I’m completely off the mark and if the following is in any way unkind but as you allude to several times it does seem to me as if you are really scared and your thoughts are in turmoil? I remember what seemed like very dark times in the days and weeks after I was diagnosed! Bit by bit and over the next months I got used to the fact of having MS, my world hadnt stopped and rays of light began to appear on my horizon.

I would like to try and reassure you and help a little. MS is a scary condition but nowhere near as scary as it was even 15-20 years ago. I hope my story helps a little:

I was diagnosed around 19 years ago when there was just 3 maybe 4 disease modifying treatments available. In the years since then some 20 drugs have become available and they are significantly more effective than the old 3-4. Now, soon to be 72 years old, I’m not doing too bad! My biggest problem is with my right leg and walking. OK I get constipated and suffer from bladder urgency from time to time but I’m otherwise not too bad and in those 19 years since diagnosis I’ve got married , enjoyed life etc.So please don’t rush in to thinking that your life is over! Time to start thinking about ‘not what you can’t do or perhaps won’t be able to do but what you can and want to do’.

One of the things you can do is start reading about things you can do to help you deal with MS including through diet, exercise and mindfulness/ meditation. Plenty of resources about all this including my favourite- the website of Overcoming MS ( living well with MS) .

something I’ve done a few times is to get myself some counselling to just talk through my fears, sadness etc and work through my feelings about having MS. Would it be worth you trying something like that including for all your earlier traumas etc?

So Millie , my advice is to focus on yourself for the next while! Give yourself 6 months or so of Millie time, loving and caring for yourself. See your friends etc but just as you would normally, enjoy time with them but keep most of your energy and time for you.

I really do hope that at least some of the above is helpful to you. More than happy to answer any questions etc.

[millie123]

Hi Jan,

Thank you so much for your message. I truly appreciate it, and I hope that in time I can also be an active participant in the forum to help others.

I am very nervous but also have a sort of acceptance of the situation. I think I’ll feel better once I’ve spoke to my neurologist and he can answer some questions I have.

Hope your weekend is going well so far!

Millie

[millie123]

Hi BusyBroccoli,

Thank you so much also, you’re right, sometimes people don’t know what to say in difficult moments.

I am very nervous about the appointment. I have so many questions.. Do they do a physical exam on the first appointment? How much medical history will they want to know?

Hope you’re having a great weekend too.

Millie.

[millie123]

Hi Hank,

Thank you so much, you are right. Focusing on how others are behaving shouldn’t be a priority right now.

I truly appreciate you telling your story, it’s so helpful because right now I’m just scared. I have personally known several people who had quite severe MS and this has clearly coloured my thinking of what the disease can look like. It’s great to know you are fairly fit and healthy!

I will take all of your advice on board, thank you.

Millie

[alison100]

Some people have more to give than others and its depends what else others have going on as well, just as you say. It feels intensely personal but their behavbious probably has more to do with their own stuff than their attitude to you.

I agree with others that approaching your friend in the spirit of finding out how she is would be a good place to start. We all can fall into the trap of thinking that people SHOULD know how we feel without having to be told, dammit! As Mr Alison 100 sometimes needs to remind me, other people aren’t usually psychic.

[busybroccoli]

First appointment they will likely want to talk about current symptoms and any results from any tests you’ve recently had.

They will probably take a history from what you can recall of anything which may be related - years, symptoms, if you had any tests then. I wrote a list of some key dates as I’m useless remembering anything with numbers and it was helpful but not necessary.

Don’t panic about recalling every little thing as they will likely ask questions to get the info they feel is relevant. It may be some things you haven’t thought of could be relevant or you may not know the exact words to describe your symptoms… they are clever with their info finding questions and find ways to help you get the right info

They may do a physical test and it’s along the lines of “look at this”, “move this part”, “touch this”, “what does this feel like?”

If they are doing a physical they may ask you to take shoes and socks off to do a test of foot nerves (i think it’s called “babinski”).

They may conclude with their current thoughts and any further tests they may want you to have. Likely will ask if you have any questions too.

It may all feel a bit of a whirlwind as they may cover a lot in a single appointment.

I find neurologists just want to get to the facts so they can seem quite to the point. I’m sure this is to make best use of the time with them.

A letter will follow afterwards outlining what happened in your appointment but it takes a little while for this to be typed up & sent so you likely will have to wait a week or 2 for that.

Let us know how it goes!! Wishing you all the best!!!

[Hank_Dogs]

You are welcome and I’ve messaged you with some other thoughts and ideas.

I’m a terrible one for picking up phrases from films so from the 4 Musketeers ‘One for all and all for one’ in the MS community.