Hello, how do I find and talk to other parents whose children have been diagnosed. My daughter was diagnosed last month and I live 2 hours away. How can I find a support group or network for parents. I am a single mom and there is no one else I can talk to. Those closest to me are saying everything that I don’t want to hear that does not make anything better. I don’t want to hear about the will of God, or this making me stronger. I am a mom who is hurting, where do I go to talk to others like me?
Hi Alyson. First, I’m so sorry to hear about your daughter. I am fairly newly diagnosed myself and know how much it would mean if any of my family cared as much as you do about your daughter, so for that give yourself a big pat on the back. It’s really not as common as you might think for family to stick by their loved ones after they receive this kind of diagnosis. You have definitely done the right thing in reaching out for help, because this is, unfortunately, a diagnosis that affects everyone in her life that chooses to stick around. As her Mom, I can understand how much it must be hurting you.
I’m in Canada, but I would strongly suggest you look up and call the closest MS Society office near you. They should have resources that can help you in trying to deal with this, and possibly even support groups. Another option is of course to come here, but I would also suggest you look into joining the online MS World forum. It is a place for patients and their family members from all over the world, to gather and seek information and mutual support. There are a lot of religious believers there but most of them are not the kind who will push it on you. I’m an atheist myself and can’t stand it when people try to shove it down my throat either. I don’t mind (anymore) folks offering out of kindness to keep me in their prayers, but like you having someone telling it that this is “His will” or it will “make me stronger” is enough to set my teeth grinding.
MS World does have a Caregivers thread and even though you aren’t living with your daughter, I’m quite sure you will be welcomed and supported. My husband has also joined and finds it helpful to speak with others who are dealing with the pain of watching their loved ones dealing with this disease. I have included a link directly to the site below but am not sure if the moderators will let it pass. If not, then just google MS World and it should come up among your first hits.
The other advice I would offer is twofold. One, there is a grieving process your daughter is or will soon, likely be going through. When she needs it, just let her talk to you on the phone if you can’t get there in person. Let her say whatever she needs to, however she needs to, even if it’s in anger and bitterness. Just listen without judgement and reassure her that you will always love her and will be there in whatever way you can be. The other thing I recommend is that you educate yourself on what MS is, how it can affect people, and keep in mind while doing so that every single patient experiences the disease effects differently. There are of, of course, many general symptoms that the majority of people will experience at some point, but no-one at this time is able to predict exactly what, how badly or for how long, any one symptom is going to last.
I wish you well, and again, thank you for being there for your daughter. You may not think you are, but just by reaching out you’ve proven how deeply you care. Sending you hugs.
Get on the internet and type in Multiple Sclerosis. Get onto Facebook and go to the different Multiple Sclerosis Support Groups. Ask questions. Let people on their talk to you personally. The groups are great. I’ve decided to become a advocate for people with M.S. and love to talk to others about their experiences, their sadness and their praises.
If I don’t know the answers, I try to find them. My favorite saying is, “I may have M.S., but M.S. doesn’t have me. I don’t have to let M.S. run my life. I need to run M.S and let it know I’m in control. It’s all in the mind on how we are to fight against it. It’s a constant fight but one a person can control. Your daughter is young. If you show fight, she’ll show fight and bravery. If you show fear and weakness, so will she. Be her knowledge and be her strength. It’s ok to cry and get angry. We all do but then it’s time to show her fight. You can do it.
This is a long shot because you wrote this message nearly 2 years ago but I found your post after doing numerous searching for mums of newly diagnosed daughters.
How is your daughter doing? But most importantly how are you doing?
My daughter was diagnosed in August/September 2014 and although we are trying to stay positive, every time we have a setback it hits us all over again.