I understand how you feel. I think the symptoms really affect you deal with it. While theres rare asymptomatic person who is devastated by a positive blood test, it seems like the worse symptoms are the more difficult it is to accept.
My initial outbreak came very quickly only 30 hrs after exposure. I always considered myself a healthy person, but clearly i was not my immune system must have been completely shot the virus rolled right in.
After diagnosis i was given single day famvir and the virus was knocked back into 3 weeks of blissful latency. Sadly that was the last time of feeling normal I have had.
Since the first recurrence I have had outbreaks every 2-3 days despite that I'm taking daily doses of medication 2-3x recommended suppression dose. The meds make the symptoms a bit less nasty but doesnt suppress them in any way. I get alot of "aborts" on the medication, ones that come out and go away in a few days, but i have new ones forming every 2-3 days so its not really helpful. These are on my face, which was rather patchy with acne to begin with, so now its a real mess. If i cut back the dose to "normal" or none for even 12hrs blisters form. Thank god the GHSV is well controlled on the high dose of meds. On the recommended dose the GHSV breaks out into "cuts" as well.
I also have nerve pain similar to what many describe. It feels like someone stabbing me in the face from the inside constantly coupled with weird sore/stiff jaw probs. I felt maybe its a side effect of the meds but after reading pain forum i doubt it. Also back/tailbone pain which thank god goes away on meds. Narcotic painkillers seem to aggrivate the outbreaks , plus they are addictive so its not really a long-term option.
The oddest/worst thing is also if i drop dose of meds I have severe nonstop lymph node swelling ( adenopothy). So far my nodes have never really gone back to normal, but with meds they are least stop hurting. On regular suppressive dose of meds, my nodes feel like they are going to burst 24/7, its the most painful thing I have *ever* experienced, it is non stop, no doc can explain it.
Also my eye is infected, in some way. I am not sure infection is corneal cause I don't get symptoms like most people describe. Its more like allergic eye probs. Very itchy and burning but not red. If i drop dose of meds for 1-2 days it comes back and it takes me over 2wks of high dose meds to get it back under control. I am scared to go off the meds now because of my eye. There seems to be weird blisters forming on the rim of my eyelid, but I dont know if its herpes or blocked sebaceous glands, since i never really looked that close until after infection.
Ofc meds are making me feel bad every day, no idea what its doing to my body, probably murdering kidneys who knows.
I have been "dealing" with this for a bit less than a year, it feels like 100 years. I cant believe some people on the pain forum like PASM55 have been dealing with it > 10yrs I admire her for not giving up. I am depressed often with thoughts of suicide especially when the pain is very bad, dont worry i am getting help.
I have some hope it will get better, but frankly every day that passes it gets worse.
I thank god every day for the small things like I do not have it worse like some people (the poor girl with elsberg syndrome or people with encephalitis/meningitis). Also I am glad I did not catch HIV.
I am happy the disease is manageable for most people and that the most often its considered to be more psychologically damaging than physically. However I feel sad because there will not ever be a significant push for better treatment since only rare cases are serious.