Don’t talk yourself out of calling a lupus helpline.
Reasons are easy to find: you’re embarrassed to tell a stranger about your problem. You’re independent, and you want to handle things yourself. You’re not sure anybody can truly understand what you’re going through. You’re afraid you’ll just hear more bad news. You doubt anybody can really help. Talking won’t make the lupus go away.
The truth is we all need help, sometimes. It’s important that you don’t isolate yourself; facing something this difficult alone leaves you vulnerable to depression and despair. There are people out there with answers, ready to reassure and assist you – and in this age of electronic communication, they are easier than ever to find.
Help By Telephone
You have the option to call, if you are unable or uncomfortable with using the Web. Legitimate numbers will be toll free; the most common prefixes are 1-800 and 1-877. They generally operate during normal business hours, which will vary, as helpline office locations may be in Pacific, Central or Eastern time zones.
Helpline operators will answer general questions about lupus symptoms and treatment; they will not give you a medical diagnosis. They may also provide names and contact numbers for support groups and other resources in your area, or help you find a physician. Helplines are not designed to provide counseling, but your operator will assist if you would like information about counseling services near you.
Some nationally recognized lupus helpline telephone numbers:
Lupus Alliance: 1 (800) 850-9000
Lupus Alliance of America Spanish Helpline (Thursdays 4:30-6:00 EST): 1 (800) 850-9000
Lupus Foundation of America: 1 (800) 558-0121
Us In Lupus: 1-855-US IN LUPUS (1 855 874-6587)
Help On the Web
The advantage to websites is their versatility: a website can support any number of useful features that are not possible with telephones. Websites offer chat rooms for those in need of a support network and reassurance from others who have personal experience and can truly understand. Websites store information in a searchable format and can be accessed with complete confidentiality; it is also possible to browse for information by subject or keyword, which means answers can be found even when you don’t know the right question to ask.
It is not necessary to send e-mail messages at a specific time or on certain days of the week, and replies can be stored and re-read at any time. Most sites include the date and year they were last updated (important when dealing with medical information, which is more trustworthy when it is current.) Sites generally have links to similar information on other sites; you can broaden your knowledge base with a click of the mouse. And last but not least, there are a lot of good sites out there.
Some words of caution: when possible, stick with websites that have names ending in dot-org or dot-gov, they are more likely to provide trustworthy information (the dot-com sites listed below are exceptions.) Read any “about us” section you can find, and hunt around a bit until you know who sponsors or hosts the site. And never give away personal information like your birthday, social security number, phone number, address or bank account numbers, especially in chat rooms.
Some trustworthy lupus help sites:
However you choose to make contact, what matters most is that you do contact someone. These services exist because lupus is a burden that should be shared, and people who have lupus need to connect with others who can truly understand, who have hard-won experience and the wisdom that comes with it.
Don’t let fear or shame stop you. There are folks out there ready and waiting to help – all you have to do is ask.