New and trying to cope

[knitmeapie]

Hi all,
I got diagnosed about 5 months ago after my tongue was numb (still is). I thought it was just a food allergy or something, but after lots of testing, they said I have MS. I've been on Tecfidera for a couple months now - Biogen is awesome and has me on their free drug program because my insurance denied my claim.

I'm doing all the right things. I exercise (training for a hundred-mile bike ride), eat healthy, keep a journal and list my symptoms, research MS, meditate, do yoga, and try to take time to rest when I can. So why is this still so hard to cope with? I'm really depressed and I feel so lonely because no one seems to know how to talk to me, besides my awesome husband. My family, friends, and coworkers are so awkward around me now. No one takes me seriously because my symptoms are invisible so when I try to explain my limitations, I get condescending smiles and eyerolling. It makes me want to just stay holed up in my house forever, which I know isn't good.

I guess I could use some advice about how to talk to people about my MS. I know that they won't ever really understand what I'm going through, but I would love to get a little respect at least. There's so much "but you look fine!" going around and I just can't take it. My life was turned upside down and I feel like I'm losing all my friends in the process. Is this common? Did I surround myself with crappy people or is there a way that I could communicate better?

I look forward to reading/posting on this forum and I'm glad there are outlets like this for all of us to vent and share.

[hunterd]

WELCOME MSWORLD KNIT!!! , we're glad to have you and look forward to hearing from you!It is extremely difficult when you do not have visible symptoms. People just do not understand why you feel the way you do.Congratulations on making that choice to use third on a DMT IMO the earlier you start a treatment, the better off you will be. As far as letting people know about your diagnosis, it is strictly a personal decision. There is no right or any wrong, no matter what you do. It can take a long time to cope with this disease, I have been diagnosed for 14 years and I still have my bad days. Talk to your doctor about your depression, depression is very common in MS and there are medications that can be prescribed to help.I wish you the best of luck!

[TinaP303]

Hey there Knitmeapie
(so, do you knit, or bake pies, or both? or do you wish someone would do that for you? fun screen name!)
Welcome, Sad that you need to be here, but glad you found this place. It's sure helped me-a lot.

People are funny. I doubt anyone really means to be rude or insulting with the "but you look so good" stuff (yeah, I get it too, I think we all do). I think it's a defensive thing, they don't know how to react. I've found that, for me anyway, I just stop to rest when I need to. If someone asks what's up I'll just say it's an MS thing. Yeah, I hate it. I'm even one of the super lucky ones with mild, mostly invisible symptoms. I eat well, am active (hey-I'm testing for Black Belt this year if all goes well). I've done so much research about MS I'm feeling like I could teach a course (but would never dream of doing so).

Talking to people about your MS may be something you want to do, but others may be really uncomfortable discussing what they may perceive as personal. People can be funny that way, just let them know you're open for any discussion, & leave it there for a bit. Not exactly what you want to hear, but it's what I've go to offer.

On the other hand, we're ALWAYS here, and we've "been there, done that, & got the tee-shirt to prove it", so post away! Questions, feelings, general ramblings of whatever nature you need to express.
There's chat rooms (find 'em on the home page-right you moderator type people?) there's almost always someone there.

Big Hugz - we're here for you.

Tina

[Teekybird]

Welcome to the group

Hi Knitmeapie!

I think I was diagnosed around when you were...March, 2015 for me. I'm on Tysabri, infusion #4 will be on Friday 8/14.

Anyway, I'm not really sure what to do as far as who to tell myself. My immediate family knows. My 'good' friends and boyfriend know. I am a teacher, and I am very perplexed about whether or not I want my co-teachers to know. On one hand, I think it would be a good thing. If I am missing days/taking time off, they will at least know why (and be less hostile if they are asked to cover a class for me while I am out). But at the same time, I don't want everyone gossiping about me. I kind of had made up my mind that I would slowly tell some teachers this year (and let gossip take over from there). But as school gets closer, I'm still not sure. My feeling is that you can tell people and it may feel good to tell them, but then you really can never un-tell them. At my school, the administrators know and I have applied for FMLA.

Anyway, Knit....I don't think I've added much insight to your original question. I guess I'm not sure what/who to tell either. I have started a local support group for people with MS and their family/friends. That has been really helpful for me. Also, as Tina pointed out, this site is also a great way of talking to others who have some idea of what you are going through.

Hugs

[JerryD]

Hi and welcome to the boards! Everyone that responded is very knowlegeable about this MonSter! The advice about seeing a therapist is 'really' good advice! Some therapists 'specialize' in helping people with MS. I think that you are doing real good things by eating right, exercising and such ! My motto is 'use it until you lose it'! It's great that you found the boards. Good luck!

[KateA2]

Hi Knit - love the screen-name.

I understand the all-consuming feelings of recent diagnosis. Reading everything, trying to get a grasp, worrying about everything, and feeling physically/mentally a mess!

Diagnosis more often this not comes right at the age where everything Big is going on/happening too. I've been diagnosed almost 5 years and it still causes the occasional existential crisis.

I recommend finding a good CBT therapist to develop a good framework for coping with anger, feelings of frustration, and to make a plan for when you have bad days. I found CBT to be really empowering, after feeling like Chronic disease had taken over the plan I had for my life.

Personally, I'd be careful/prudent who you tell about your MS. People can be totall arsehats, so perhaps only on a needs-to-know until you feel more settled and figure things out? I wish I'd have told fewer people...so I always say err on the side of caution.

[newtoms1234]

Hi there!
I was in your shoes 4 years ago. Recently diagnosed and scared to death about what was going to happen. I grieved for quite a while, thinking about why this was happening to me, my husband, our daughter...

I now have a 5 year old going to kindergarten tomorrow (What!!!) and a rambunctious 2 year old!

I was prescribed Copaxone and did a daily injection for 3 years. Often an ugly reminder of how things had changed for me. I've been on Tecfidera for almost a year now, and try to think of it as a viatamin (stupid), but it helps.

Please know you aren't alone. People can be insensitive and as other people have said; often times don't know what to say.

Anyway, tell everyone or no one, but do it on your terms. I worked with the same people for 3 years and never felt the need to tell anyone. I felt extremely isolated and alone. I started a new job a year ago and told a coworker about it after a few months. It was as if a huge weight was taken off my shoulders by telling someone about something that none of us have any control over.

I've never posted here, but felt drawn to your post to let you know that you aren't alone, try to surround yourself with positive people. It sounds like your husband is supportive. I'm lucky to have a great husband as well!

Take care of yourself and welcome to a club that no one ever asked if we wanted to belong to!!

[poppydarling]

I'm doing all the right things. I exercise (training for a hundred-mile bike ride), eat healthy, keep a journal and list my symptoms, research MS, meditate, do yoga, and try to take time to rest when I can. So why is this still so hard to cope with? I'm really depressed and I feel so lonely because no one seems to know how to talk to me, besides my awesome husband. My family, friends, and coworkers are so awkward around me now. No one takes me seriously because my symptoms are invisible so when I try to explain my limitations, I get condescending smiles and eyerolling. It makes me want to just stay holed up in my house forever, which I know isn't good.

I guess I could use some advice about how to talk to people about my MS. I know that they won't ever really understand what I'm going through, but I would love to get a little respect at least...

So nice to "meet" you — wish it was under better circumstances

I was diagnosed 15 years ago but likely had MS for many years before that, and one thing that my doctor reminds me of is that you can't go backwards and that you didn't do anything to have this happen to you. You can also do all the "right" things and it can still get worse – that's something I'm dealing with now. How could that not feel bad or depressing? I guess we just have to make friends with that somehow.

Things got better as I got more comfortable with my situation, and learned to respect my feelings first. I think when we're upset that people aren't respecting us, it often means that we're not caring for or respecting our own feelings about the situation. When we honor ourselves, nothing that anyone says or does really matters.

I certainly had an easier time once I started disclosing and sharing my experiences. The timing of that can be tricky, and everybody's situation is different, but as another poster said, it was a huge weight off my shoulders. Setting that groundwork also helped me deal with judgmental or unkind comments (i.e. I told you I have MS and this is how you deal with a person who has a chronic debilitating condition? Now it's clear you really are a jerk, and I don't have to spend my precious energy being polite. )

Keep doing the things that make you feel better and in control, and try not to worry too much. Losses are just built into this situation and I think the only way to deal with them is to accept and grieve them as they come along.

[cleobear72]

Hi knitmeapie. Telling coworkers, family and friends is really a personal choice on who and when you tell. For me, I didn't have a choice about telling work. I had surgery which caused my flare which lead to my diagnosis 2 years ago, although I had symptoms before this big flare. Flare left me using a cane which meant I could not do my regular job any longer. Kind of hard to hide that! I was very lucky though. I kept my management team informed and they amazingly found a new position for me using my skill set but in another capacity when I was ready to come back. I told my friends at work and a few coworkers. If I'm asked, I will share with people. I had to be comfortable with my "new normal" before I felt comfortable telling others. The one great bonus about all of this was I found other people I work with that also have MS and go to the same MS clinic I do and now I have become friends with them.

Allow yourself the time you need to become comfortable with having MS and tell those who you are comfortable telling. You are not obligated to tell anyone. If you are looking for those who really understand what you are going through, try a local MS support group. If you are not sure where to find one, start with calling your local MS society for information. Good luck knit and keep us updated!

[knitmeapie]

I think most of you are a lot wiser than I am because I'm thinking I got way to public about my diagnosis way too fast. I guess I was seeking sympathy, but talking about disease seems to just make a lot of people awkward.

I'm so torn about going to a therapist. I was diagnosed with bipolar disorder as a teen and went through so many psychiatrists, therapists, and drugs. It was exhausting and nothing ever helped, so I'm really reluctant to try that whole thing again. On one hand, I totally understand why I should, but I'm just so sick of doctors' offices. In the last year, I've had surgery, seen 7 different specialists for various reasons, and had pretty much every medical test ever. It's hard to say whether going through more of that would help or hurt.

Thank you all for responding and relating. It really helps to see that I'm not the only one going through this, even though I wouldn't wish it on anyone.

[TinaP303]

It really helps to see that I'm not the only one going through this, even though I wouldn't wish it on anyone.

darlin' - we're all floating in that same boat. Glad you found us.