The Invisible, Silent Disease

I have an invisible, silent disease.  I never know what to expect from day to day.  I am learning to make the best of the good days and lay low on the bad ones.  My eyes are most worst enemy on bad days.  There are times I want to pluck them out or walk around with them closed because they are so sore and I can't stand the light. My family has had to deal with the disease as well. They have become accustomed to seeing me on the couch on bad days with a heating pad on my face to relieve eye muscle strain headaches.  They often have to deal with a dark house so I can stand it.   Things that used to get done in a matter of minutes take me so much longer because I am so fatigued and my joints hurt. Each year another joint seems to be added to the list.  This year it is my right hip and my left ankle that get swollen and are painful.  People mean well, but they say silly things like "I had something in my eye one time too".  So not only do I deal with the disease, but I deal with the misunderstanding and loneliness of the disease.  My faith in God is what gets me through it all.  God gives me the strength to keep going each day, to continue teaching, and to continue being a wife and mother in my home.  I have a closer walk with God because of this disease that I probably would not have otherwise. 
ronablair ronablair
46-50
8 Responses May 17, 2012

I am a fellow sufferer, and for me too, it's only my faith in God that has allowed me to keep going. I hate the isolation that Sjogren's creates--it almost seems like it makes my family angry when I tell them I'm have a flare. I know it's just because they feel helpless. Know that there are people out there who understand.

I am so sorry I have not responded to all of these posts. Life has gotten a bit busy as my job status changed and I forgot about having written here. My life has changed quite a bit since my last post. I have changed how I eat. I am off of processed foods, sugar and high fat foods. I have lost 40 pounds and am now able to enjoy exercising. I discovered Piroxicam and that is really helping my joints. I exercise even when I do not feel like it, because it helps keep my joints pain-free. I have had some setbacks, but life is definitely better and I have a lot of energy. My family remains very supportive and is such a blessing. My faith in God is what helps me most of all. God gives me the strength when I have nothing left. He knows the desires of my heart and provides for me over and over again. Today I actually met someone with Sjogren's face to face instead of on the internet and we have agreed to support each other. So blessed and dealing with my new normal as I am able.

A great way to deal with SS is to pool information and experiences. I joined Bensfriends.org's online network Sjogren's Syndrome Support and learned so much from real patients on how to deal with the condition--from toothpastes to dealing with the weather, etc.

You might want to consider joining, too. Signing up is a breeze and is free. Here's the link to the forum page for you to browse.

http://www.sjogrenssyndromesupport.org/forum

Hope to see you there.

Thanks for this more positive post. I'm newly diagnosed with Sjogren's and Bronchiectasis. It attacked my lungs and sinuses before they figured out what was wrong with me. I am a Christian and a wife and mom of 3 boys. I'm struggling now with depression and greiving the loss of my old self. I read one story that made me cry about a lady that lost her whole family. I don't want this to completely destroy my life. I would love to learn how this made you stronger.

I feel your pain. I have been struggling with the disease for years, but diagnosed 2 years ago. I have had 3 teeth pulled, 12 root canals in three months and several other ongoing dental procedures. I too have the eye and mouth dryness. I can tell you the only thing that helped me besides the drops is my humidifier. I place it close to the bed and it does help.
Do you get sinus headaches too? That is also from the dryness.
My joint pain is the worst.
The most recent problem is my lungs. I now have limited air space, so I am constantly out of breath.
I wanted to ask if you have family support? My 85 year old mother is the only person in my family that helps me with trips to the doctors and dentist.
I have 2 sisters and neither one has even asked how I feel.
This is a disease that is invisible, so you get ignored or accused of not having any health problems.
My uncle suggested that I exercise! Can you believe the ignorance? I, like you have limited energy, and all the other symptoms so the thought that working out would cure me is really upsetting.
I wish you the best in keeping your symptoms under control. I wish I had a friend that understands. This helps knowing I am not alone. Thank you for your post.

Hi ..I can totally relate with your eye pain...it seem the most terrible symptom for me as well. Have u found anything that helps other than the compress?...sending peace your way..

I have sjogren's too. i can understand the headaches and fatigue from eye pain. it's been hurting me a lot and it really kills my mood and social life (and that especially stinks cuz i'm a teenage college student and we're known for being active and social but i can't be because i'm nearly always fatigued and in pain). it's great that you have for family for support! that's really important in order for you to feel like you have people to help you. thanks for sharing your story. i hope things get better for you. ;)

I relate to your symptoms of different joints each year. It seems that while there is general joint tenderness there is always more prominent pain in one or two other joints. I was recently diagnosed after decades of trying to figure out what was wrong. I always knew I didn't have the energy level of others and just accepted it as part of me. Pain started back in my late twenties but again just accepted it....As I got older all my physical symptoms seemed like just getting "older". A long story short the pain and fatigue got incapacitating on some days. I gave up more and more activities and got to the point I could not keep up with my house. Brain fog, fatigue , pain...a loosing battle. I felt lazy and incompetent. I am glad to know this is not "normal" but my body not functioning as it could. Dealing with learning my limitations and very grateful to God for always giving me hope and knowing I can trust Him with this. My hope in God is far greater because of this..I',m 55 years old...

Yes, I am determined that although I have a disease, the disease will not have ME. I definetly have learned how to make the most of the good days and to rest on the not so good ones.